2011; 33 e50–e56WEB PAPERThe ethics of HIV testing an.docx

2011; 33: e50–e56
WEB PAPER
The ethics of HIV testing and disclosure for
healthcare professionals: What do our future
doctors think?
JULIE M. AULTMAN1 & NICOLE J. BORGES2
1Northeastern Ohio Universities College of Medicine, USA,
2Wright State University Boonshoft School of Medicine, USA
Abstract
Aim: This study examined future medical professionals’
attitudes and beliefs regarding mandatory human
immunodeficiency virus
(HIV) testing and disclosure.
Method: A total of 54 US medical students were interviewed
regarding mandatory testing and disclosure of HIV status for
both
patient and health care professional populations. Interviews
were qualitatively analyzed using thematic analysis by the first
author
and verified by the second author.
Results: Medical students considered a variety of perspectives,

even placing themselves in the shoes of their patients or
imagining
themselves as a healthcare professional with HIV. Mixed
opinions were presented regarding the importance of HIV
testing for
students coupled with a fear about school administration
regarding HIV positive test results and the outcome of a
student’s career.
Third- and fourth-year medical students felt that there should be
no obligation to disclose one’s HIV status to patients,
colleagues,
or employers. However, most of these students did feel that
patients had an obligation to disclose their HIV status to
healthcare
professionals.
Conclusion: This study gives medical educators a glimpse into
what our future doctors think about HIV testing and disclosure,
and
how difficult it is for them to recognize that they can be
patients too, as they are conflicted by professional and personal
values.
Introduction
The overall aim of this qualitative study is to gain a deeper
understanding of future doctors’ attitudes and beliefs regarding
mandatory human immunodeficiency virus (HIV) testing and

disclosure, and to explore current medical students’ personal
biases and stigmas surrounding HIV testing and disclosure.
Present and future doctors may face the challenges of having
to not only request that patients disclose their HIV status, but
also to decide whether to report one’s own HIV status to
patients, colleagues, and/or employing healthcare institutions.
By examining and identifying some of the beliefs and attitudes
surrounding such dilemmas, we believe this information can
be of help to medical educators as they work with medical
students and their clinical preceptors to resolve many of the
social and ethical problems associated with the stigma of HIV
disclosure, while improving the overall health of individuals
and communities. In addition to the presentation and analysis
of our data, we provide curriculum recommendations for
ethics education for HIV testing and disclosure for medical
students. First, we will provide descriptive background infor-
mation on HIV testing and disclosure.
HIV testing

In the United States, there are several private and public HIV
testing sites including free-standing clinics, hospitals, state
Practice points
. Present and future healthcare professionals may face the
challenges of having to not only request that patients
disclose their HIV status, but also to decide whether to
report one’s own HIV status to patients, colleagues, and/
or employing healthcare institutions.
. Given the lack of knowledge about HIV testing, and the
problems with anonymity, patients and HCWs alike,
even when knowledgeable in HIV treatment and pre-
vention, are often reluctant to get tested for HIV out of
fear that positive test results will affect reputations,
employment status and insurance benefits.
. Differences were noted among pre-clinical students
(first- and second-year students) and clinical students
(third- and fourth-year students who have been fully
exposed to patient care) with respect to the duty to
patient care versus duty to oneself.

. By examining and identifying some of the beliefs and
attitudes surrounding such dilemmas, this information
can be of help to medical educators as they work with
medical students and their clinical preceptors to resolve
many of the social and ethical problems associated with
the stigma of HIV disclosure, while improving the
overall health of individuals and communities.
Correspondence: J. M. Aultman, Department of Behavioral and
Community Health Sciences, Northeastern Ohio Universities
College of Medicine
and Pharmacy, 4209 State Route 44, PO Box 95, Rootstown, OH
44272-0095, USA. Tel: 330-325-6113; fax: 330-325-5911;
email:
[email protected]
e50 ISSN 0142–159X print/ISSN 1466–187X online/11/010050–
7 � 2011 Informa UK Ltd.
DOI: 10.3109/0142159X.2011.530311
health departments, and clinician offices. Every state, along
with Guam, Puerto Rico, and the US Virgin Islands offers
confidential testing, where a person’s name is recorded with
test results, and 45 states including Guam and Puerto Rico,

offer anonymous testing, where no name is used or connected
to test results (Center for Disease Control 2005). In reporting
cases of HIV, almost every state uses names. Five states use
name-to-code reporting and eight states only use codes. While
it is important to test and report individuals with HIV to better
understand the spread of the disease, to develop better safety
and preventative measures, and to deliver needed healthcare
to those who are afflicted, there are several ethical concerns
about the procedures for testing and reporting. Globally, many
efforts have been made to develop surveillance and reporting
programs. For example, in 1999, a European HIV reporting
system including 39 countries of the World Health
Organization (WHO) European Region was developed for
AIDS reporting. Persons who test positive are identified in
various ways (e.g., names, codes/identification numbers) and
reported by clinicians and/or laboratory personnel depending
on the regulations of individual countries. D’Amelio et al.
revealed that 27% of the 121 countries evaluated have

legislative measures in place mandating HIV testing for
vulnerable populations (e.g., commercial sex workers, men
who have sex with men, injecting drug users; D’Amelio et al.
2001; Li et al. 2007). Worldwide, many individuals do not
know the differences between anonymous and confidential
testing,1 or if they are aware of mandatory testing and
reporting programs, they may refuse to get tested, realizing
with a positive result their names or identifying information
may be reported. For those individuals who are living in states
that do not give them the option for anonymity, they too are
less likely to get tested. Recently, recommendations by the
Center for Disease Control (CDC 2006) suggest that all adults
and adolescents (ages 13–64) should be given voluntary,
automatic, and routine HIV tests upon entering a healthcare
facility so as to normalize HIV screening as a routine part of
medical care. Marcia Angell argues there is a need for HIV
testing to become more routine (Angell 1991). Using an ‘‘opt-
out’’ approach, individuals may have the opportunity to

decline testing, but healthcare workers (HCWs) are obligated
to provide basic information about HIV, including what
positive and negative test results mean. Although these
recommendations may help to normalize the HIV screening
process, there may be no options for anonymity, which may
persuade individuals to opt-out, or even forgo medical
attention altogether out of fear of being tested without prior
consent.
Given the lack of knowledge about HIV testing, and the
problems with anonymity, patients and HCWs alike, even
when knowledgeable in HIV treatment and prevention, are
often reluctant to get tested for HIV out of fear that positive test
results will affect reputations, employment status and insur-
ance benefits. Although previous studies have critically eval-
uated both patients’ and HCWs’ perspectives regarding HIV
testing and disclosure (see, for example, Dixon-Mueller 2007;
Galletly et al. 2008; Kagan et al. 2008; Tesoriero et al. 2008),
there are few recent studies examining medical students’

perspectives (see e.g., Evans et al. 1993).
HIV disclosure
When tackling the issue of HIV disclosure, most studies focus
on whether patients have a duty to disclose their HIV status to
their partners and to healthcare professionals so as to acquire
needed therapies and treatments, as well as to protect
healthcare professionals from even the slightest possible
exposure. Many critics conclude that patients do have a duty
to disclose their HIV status to their partners, to anyone who
may be susceptible to HIV transmission, or to those profes-
sionals who are obligated to provide care and treatment.
Under this popular line of reasoning, supported by the CDC,
the American Medical Association, among other health orga-
nizations, a public health ethic appears to take precedent over
individual freedoms and the right to privacy. However, when
tackling the issue as to whether HCWs also have a duty to
disclose their HIV status to their patients (Perry et al. 2006),
there is little consensus as to whether disclosure is valuable,

especially given the low probability of transmission. In 1991,
CDC recommended that infected HCWs with HIV or Hepatitis
B should not perform exposure prone procedures unless they
have ‘‘sought council from an expert review panel and [have]
been advised under what circumstances, if any, they may
continue to perform these procedures.’’ The CDC defined an
exposure-prone procedure to include ‘‘digital palpitation of a
needle tip in a body cavity or the simultaneous presence of the
health care worker’s fingers and a needle or other sharp
instrument or object in a poorly visualized anatomic site.’’ And,
even if the panels permit them to practice, it is recommended
that HCWs must still inform patients of their serologic status
(Gostin 2000). The American Medical Association’s policy on
HIV disclosure reads, ‘‘HIV infected physicians should disclose
their HIV seropositivity to a public health officer or a local
review committee, and should refrain from doing procedures
that pose a significant risk of HIV transmission, or perform
those procedures only with the consent of the patient and the

permission of the local review committee.’’ Furthermore, ‘‘A
physician who has HIV disease or who is seropositive should
consult colleagues as to which activities the physician can
pursue without creating a risk to patients’’ (Blumenreich 1993).
Marcia Angell in ‘‘A Dual Approach to the AIDS Epidemic,’’
wrote that patients have a right to know whether a doctor or
nurse who performs invasive procedures is infected with HIV.
Infected HCWs should refrain from invasive procedures, or
should expect to have reasonable alternative work
(Blumenreich 1993). Nevertheless, the 1995 Clinton adminis-
tration instructed CDC to review its guidelines that arbitrarily
restrict HIV infected HCWs, which possibly lead to
discrimination.
Critics, such as American Law Professor, Gostin, have
proposed new national policies, emphasizing patient safety by
ensuring that infection control procedures are systematically
implemented in healthcare settings, which would focus on
‘‘safer systems of practice rather than excluding and stigma-

tizing infected healthcare workers’’ (Gostin 2000).
Furthermore, Gostin argues that while a physician may
choose to put the patient first by disclosing his or her status,
the law should not require HCWs to disclose their HIV status,
since it is an invasion of the privacy of the HCW, and a
The ethics of HIV testing and disclosure
e51
possible professional detriment to the therapeutic relationship
following such an emotional and unsettling conversation with
patients. That is, since the HIV infected HCW is also a patient,
disclosure may be embarrassing and damaging to one’s
professional reputation. Besides the fear of discrimination
and the view that disclosure is an invasion of privacy, Gostin
and others believe that since the risk of HIV transmission from
HCW to patient is too low to meet the legal standard for
disclosure, informed consent guidelines and laws should not
require HIV infected HCWs to disclose their status to patients.

But if disclosure may be embarrassing and damaging to a
HCWs medical career or transmission is too low to meet the
legal standard for disclosure, it would seem as though patients,
just as HCWs, should not be required to disclose their HIV
status when seeking non-invasive care, which may not be
relevant to the treatment and monitoring of HIV. Nonetheless,
healthcare professionals purport, simply for preventing harm
to self and other, the HIV status of patients should be known
regardless of the level of harm in diagnosing, monitoring, or
treating patients for related and non-related conditions and
preventative care.
In the following study, these ethical issues are tackled by
our medical student-participants – our future doctors, whose
perspectives regarding HIV testing and disclosure for both
patients and HCWs give us insight into their critical thoughts
and ethical decision-making regarding personal and patient
care, and whether guidelines such as those created by the CDC
will be followed, or ignored, by our future physicians whether

they practice nationally or internationally with different
guidelines and laws.
Methods
During 2006–2007, a total of nine focus groups, containing 54
volunteer student-participants (34 females and 20 males),
ranging in ages 18–26, from two, four-year medical schools in
the United States, were interviewed by the investigators of this
qualitative study. Both medical institutions have an equal ratio
of males and females enrolled (50 : 50); however, there is an
unexplainable disproportionate number of female students
who volunteered at each level of their medical education
(years 1–4). All medical students were invited to participate via
email invitations and in-person classroom announcements,
both of which included an informational sheet describing the
study and role of voluntary participants (e.g., students may
freely accept or decline participating in the study, any student
who participates may leave the study at any point). Full
institutional review board (IRB) approval was obtained prior to

the start of the study. Six focus groups, containing 30 first- and
second-year students (19 females and 11 males) were inter-
viewed during their non-clinical training at their respective
medical schools. Three focus groups, containing 24 third- and
fourth-year medical students (15 females and 9 males), were
interviewed during their clinical training at their respective
medical schools, with the exception of three, third-year
medical students (3 males) who were interviewed during a
psychiatry clinical rotation at a local hospital. All IRB guide-
lines and ethical procedures were followed (i.e., informed
consent). All student-participants were asked a pre-established
set of general, open-ended questions regarding mandatory
testing and disclosure of HIV status for both patient and health
care professional populations. The open-endedness of these
questions, commonly used in qualitative research, prompted
students to verbalize their interpretations of concepts (e.g.,
‘‘compulsory’’ or ‘‘mandatory’’) and freely give their opinions
on difficult, ethical and professional issues, which enabled the

investigators to gain data with a range of attitudes and beliefs.
The pre-established, general questions used in the recorded
interviews are as follows:
(1) Do you think medical students should be tested for
HIV? How about physicians? Other healthcare
professionals?
(2) Should HIV testing be voluntary or mandatory? Why or
why not?
(3) Do you think that patients should disclose their HIV
status to their physician?
(4) Are there any circumstances under which a patient
should not disclose this information about their health
status?
(5) If a physician has HIV, do you think he/she should
disclose this to his/her patients? Please explain why or
why not.
These pre-established questions comprise the first part of this
study; a separate set of questions focusing on current medical

students’ perspective on and use of universal precautions
comprise the second part of the study and findings are
reported in a separate paper titled ‘‘The ethical and pedagog-
ical effects of modeling ‘not-so-universal’ precautions’’.
Interviews for the first part of this study were conducted for
30–45 minutes, while focus group interviews for the entire
project lasted 60–75 minutes. Investigators used a hand-held,
digital audio recorder to record all interviews. Project inves-
tigators took hand-written notes during each focus group,
alerting them to significant points and patterns of experiences,
beliefs, and attitudes. All recorded interviews were transcribed.
Names and other identifiers that were verbalized by students
during the focus group sessions were not transcribed.
Transcripts were qualitatively evaluated by the project inves-
tigators individually and then collectively to ensure that
emerging themes in the data were objectively identified and
analyzed using thematic data analysis, whereby repetitive
themes emerged from students’ responses and meaning units

were recorded and coded. The project investigators included
the authors of this article, both of whom also conducted the
focus groups at their respective institutions; the first author
analyzed the data, and the second author verified the analysis.
Data from students’ answers (from the above questions and
discussion that followed) were divided into two significant
categories: HIV testing and HIV disclosure.
Results
In general, there were no identifiable differences in the reports
given by medical student-participants from the two medical
schools. In addition, there were no identifiable differences in
responses among males and females. However, there were
significant differences among pre-clinical students (first- and
J. M. Aultman & N. J. Borges
e52
second-year students) and clinical students (third- and fourth-
year students who have been fully exposed to patient care)

with respect to the duty to patient care versus duty to oneself.
Although most students expressed their personal opinions,
many students provided insightful, constructive, well-sup-
ported arguments surrounding HIV testing and disclosure,
often placing themselves in the shoes of their patients or
reflectively thinking on what it would be like to be a physician
with HIV. The focus groups conducted were useful not only
for the purposes of this study, but also for students’ medical
education by giving them an opportunity to discuss and reflect
upon a controversial topic in medicine and public health.
Specific results from this study are divided into two primary
sections, ‘‘HIV testing’’ and ‘‘HIV disclosure,’’ along with
relevant sub-sections.
HIV testing
Do you think medical students should be tested for HIV? How
about physicians? Other healthcare professionals?
In response to the first focus group question, first- and second-
year students at both medical schools reported that testing can

reduce the social stigma associated with HIV; by having every
student experience the testing procedures from ‘‘a patient’s
perspective’’, along with a formal education about HIV from
clinical, psychological, and social perspectives, the stigma
could be reduced and students would be better informed to
help their patients and themselves in the prevention and
treatment of HIV. The majority of students who supported HIV
testing in medical school (or when they became licensed
physicians) felt that testing for HIV is an important step toward
physically and emotionally caring for themselves and their
patients. They also recognized that attitudes and beliefs may
positively change in ways that alleviate current stigma as HIV
screening increases or becomes a normalized practice.
However, not all students supported HIV testing for medical
students and/or healthcare professionals.
A total of nine first- and second-year students at both
medical schools feared the consequences of the HIV tests.
Their greatest fear was that of the medical school or

administration finding out about any risk factors (drug use0
or positive test results, which, they believe, would ruin
students’ future medical careers. They expressed they would
not be valued or accepted as an HIV professional, which
interestingly, provoked students to think about what patients
may feel and think with respect to their own professional lives.
Students from both medical schools feared their privacy would
not be protected and that positive results would show up on
their permanent records. One male first-year student explained
that he would not want to get tested for incurable STDs
‘‘because of the possibility of the school finding out.’’ Other
students reported that because the transmission rate was so
small, and universal precautions were in place, there would be
no need to get tested. Twelve students at each stage in the
four-year medical school curriculum explicitly argued that only
those who are at risk for HIV should be tested, but that testing
should be voluntary regardless of the risks to patients and
colleagues. Students from both medical schools (approxi-

mately 75%, or 40 out of 54 clinical and non-clinical) reported
that if healthcare professionals were tested positive for HIV,
negative consequences, such as lawsuits, loss of medical
licenses, and limited patient interaction, could occur. Rather
than directly answering the focus group question, third-year
students at both medical schools were inquisitive and asked
about the benefits of knowing the results of an HIV test as it
relates to the safety and protection of others. After re-directing
their questions and answers (when dialogue got ‘‘off-track’’) by
asking how they felt about being tested as medical students,
these third-year students felt that tests should be given to
healthcare professionals only if there is a significant transmis-
sion rate from physician to patient. Two fourth-year students at
one medical school added that ‘‘testing is expensive’’ and
some people, especially medical students, may not be able to
pay for the tests. The availability and accessibility of medical
resources needed to test medical students and healthcare
professionals alike was a general concern among the fourth-

year students, as well as how information gained from the tests
is going to be used (e.g., will information hurt your potential to
get insurance). Overall, there was little concern regarding the
possibilities of transmission of HIV from physician to patient.
Mandatory testing
Should HIV testing be voluntary or mandatory? Why or
why not?
It was duly noted among first through third-year medical
students at both institutions that the stigma becomes reduced
when testing is mandatory. First-year students at one medical
school indicated that mandatory testing may help more people
get treatment. A first-year student at the second medical school
indicated that ‘‘if we are not disclosing information about
ourselves then I don’t think we can ask our patients to provide
the information – no double standard.’’ Another student
reported, ‘‘I think I would lean towards HIV testing be
voluntary instead of mandatory. I really value having individ-
ual rights.’’ However, another first-year student stated, ‘‘I

would say mandatory. It’s just like. . .like our pap smears and
we test for that annually, and it’s not stigmatized. I don’t see
why we couldn’t do the same thing with HIV. Encourage
women and men to get their annual HIV test if they, or you
know, at least every few years. . .’’
Second-year students generally thought that so long as laws
(or guidelines) were in place to protect discrimination,
healthcare professionals and students should be mandatorily
tested. A female second-year student, echoing the same
sentiment, suggested that testing be anonymous and confi-
dential if it were to be mandatory. Another second-year
student felt that one would be more likely to pay attention [to
universal precautions] if a person’s HIV status were known.
While first- and second-year students from both medical
schools indicated the stigma would be greatly reduced with
mandatory testing, third- and fourth-year students felt that
discrimination would occur and the stigma would continue to
exist, even though ‘‘HIV is no longer a death sentence.’’

More than half of students (63%, or 34 out of 54 clinical and
non-clinical) interviewed at both medical schools explicitly
argued that individual rights are critical. If tests were manda-
tory, the right to privacy should be upheld to protect the
e53
student or healthcare professional from negative conse-
quences, such as employment and insurance discrimination.
These students also indicated that mandatory testing would be
a waste of resources, since it is a common belief among
students and healthcare professionals that ‘‘we do not typically
engage in risky behaviors, such as unprotected sex, or fail to
use universal precautions’’.
Patient disclosure
Do you think that patients should disclose their HIV status to
their physician? Are there any circumstances under which a
patient should not disclose this information about their health

status?
We found that first- and second-year students (approximately
73%, or 22 out of 30 non-clinical students) expressed that
patients should disclose their HIV status to their physicians in
order to educate oneself and to prevent the possibility of a
misdiagnosis or wrong treatment regimen. A first-year student
at one medical school indicated that HIV testing is a mandatory
practice within the US military, so he has to get tested each
year that he is enrolled with the military. However, many first-
and second-year students indicated that because of the
potential for discrimination, patients should not have to
disclose their HIV status. One first-year student believed that
it is the physician’s responsibility to prevent the disease. First-
year students from both medical schools suggested that if a
physician or healthcare professional does not have to disclose
their HIV status to the patient, then the patient should not have
to disclose his or her status.
The general consensus among third- and fourth-year

students at both medical schools is for patients to disclose
their HIV status in order for healthcare professionals to
properly treat their patients and for properly protecting
themselves when working with HIV infected patients. Both
groups of students recognized that the stigma associated with
HIV would still exist regardless of patient disclosure. Most
third- and fourth-year students (79%, or 19 out of 24 clinical
students) articulated how transparency about one’s disease
and disease-related behaviors, or disclosure specifically, is an
important patient duty; it is the patient’s duty to protect the
healthcare professional and to seek and adhere to treatment.
Physician disclosure
If a physician has HIV, do you think he/she should disclose this
to his/her patients? Please explain why or why not.
First-year students at one medical school felt that if there is a
risk, then the physician should disclose his or her HIV status.
First- and second-year students at both medical schools
believed that it is up to the physician to disclose. One first-

year student at another medical school exclaimed that I am
‘‘too shocked even to imagine’’ this could happen to a
physician. Another first-year student believed that so long a
physician can practice medicine, disclosing such personal
information to a patient is acceptable. A third student believed
that disclosure should depend on the specialty of the
profession. A male second-year student at one medical
school ‘‘would feel guilty’’ if he did not disclose his HIV
status to patients.
Those first- and second-year students who believe that
physicians should not disclose their HIV status to patients
explained that ‘‘the patient is not caring for the doctor,’’ or that
it is ‘‘not professional to disclose personal things.’’ Some first-
and second-year students indicated that due to the potential
loss of clients, a physician should not disclose his or her HIV
status. A second-year student stated ‘‘if you are an HIV surgeon
you wouldn’t be making the money because you would be
limited to only surgeries that involve only HIV patients.’’

One third-year student suggested that physicians disclose
their status in order to send the message to patients that they
too need to take precautions. Another third-year student
reported ‘‘We need to learn personal responsibility not just
with universal precautions but with whatever status we have.’’
A fourth-year student at one medical school placed himself in
the shoes of his patients and reported, ‘‘If I was a patient, I
would want to know no matter what kind of doctor [was
treating me].’’ Six students questioned why even discuss HIV
as a threat, since the threat is so slim and prophylaxis is
available. Knowing hepatitis was a greater threat, these
students could not understand why HIV is still an issue.
Three out of 10 fourth-year medical students believe the
patient has a right to know. The majority of third- and fourth-
year students believe that disclosure will not help the
healthcare professional or his or her patients, since the risk
of transmission is very slim.
Discussion

In this study, we explored how medical students feel about
HIV testing and disclosure, and sought to understand some of
the dilemmas they may face as future healthcare professionals.
Due to the qualitative nature of this study (i.e., using open-
ended questions in a focus group format), our medical student-
participants considered a variety of perspectives, even placing
themselves in the shoes of their patients or imagining
themselves as a healthcare professional with HIV. Regarding
duty to patients versus duty to oneself, when placed in the
physician’s shoes, third- and fourth-year medical students
consider the consequences (to themselves) more than patient
care, but emphasized patient obligations and responsibilities in
being transparent about their disease and disease-related
lifestyles and behaviors. First- and second-year students
emphasized the importance of testing to provide better care
to patients; they placed themselves in their patient’s shoes, and
were more empathetic to the emotional and social needs of
patients compared to the third- and fourth-year students. The

investigators attribute this difference to the lack of clinical
training among first- and second-year students, who are
idealistic in providing good care to patients and have not
(yet) developed jaded or cynical attitudes, which we witness in
more clinically-oriented students, interns, and residents. Also,
third- and fourth-year students generally have more exposure
to the business and legal practices related to medicine, and
confront justice issues such as resource allocation and avail-
ability (one reason why these students may have considered
the cost of compulsory testing).
e54
Some students describe their unresolved conflicts between
their personal freedoms and professional obligations. For
example, medical student-participants, in identifying one of
the core ethical dilemmas of HIV testing and disclosure, report
that anonymity is important in the preservation of privacy and

personal freedom, but question how these values should be
balanced against the greater good of society. These ethical
issues are tackled by our medical student-participants – our
future doctors, whose perspectives regarding HIV testing and
disclosure for both patients and HCWs give us insight into their
critical thoughts and ethical decision-making regarding per-
sonal and patient care, and whether guidelines such as those
created by the CDC will be followed, or ignored, by our future
physicians. Mixed opinions were presented regarding the
importance of HIV testing for students coupled with a fear
about school administration regarding HIV positive test results
and the outcome of a student’s career.
Regarding HIV disclosure, some of our medical student-
participants recalled the case of Dr. David J. Acer, an American
dentist who was believed to have infected his patients with
HIV in the late 1980s, but immediately dismissed this case,
since accidental transmission of HIV from doctor to patient
was never proven (Tuboku-Metzger et al. 2005). Given the

lack of evidence showing a risk of transmission from a HCW to
a patient, our third- and fourth-year medical students felt that
because the risk was so slim, there should be no obligation to
disclose one’s HIV status to patients, colleagues, or employers.
However, most of these students did feel that patients had an
obligation to disclose their HIV status to healthcare profes-
sionals due to a greater risk of transmission.
Many physicians, in general, feel the most essential thing in
life is to continue practicing medicine and that disclosing their
HIV status would have negative outcomes, including perma-
nent loss of employment (Gerberding 1996; Fost 2000; Gostin
2000, 2002; LeBlanc 2002; Weiss et al. 2005). Based on our
collected data, many of the medical students interviewed were
also afraid of the possible negative outcomes for disclosing
such a highly stigmatized disease. However, some students,
especially those in the early stages of their medical training,
thought that some of these negative outcomes could be
prevented if medical students are tested before making career

decisions that could affect themselves and their future patients
(e.g., choosing to practice psychiatry instead of surgery). A few
medical student-participants thought that HIV disclosure could
benefit the therapeutic relationship, others thought patients
should not be privy to HCWs personal information, but that
employers should be made aware so as to monitor safety
practices. Some physicians, who have disclosed their HIV
status to their department chairs or others in authoritative
positions, felt a sense of relief and were able to practice
medicine without stigmatization and discrimination, and with-
out affecting patient care. For example, one Chicago psychi-
atrist explained, ‘‘I felt that though completely asymptomatic,
informing my department heads that I was HIV sero-positive
was the only way to keep work related stress at more
manageable levels . . . I only share the information about my
being HIVþ during the course of treatment when a patient
clearly needs the example of a role model and slow progressor
living productively with HIV to provide a contrast to their

hopelessness regarding their own diagnosis.’’ (Shernoff 1996).
In closing, this study helps medical educators understand
students’ mindset, opinions, and beliefs about HIV testing and
disclosure. For those medical schools who already have this
topic integrated into their ethics curriculum, their faculty may
want to compare and contrast the goals and objectives for their
lectures and courses with the depth and breadth of perspec-
tives shared by students in this study. For schools where this is
not currently an ethics topic, we encourage their faculty to
derive innovative methods for exploring students thinking
about and discussing these issues, especially the effects of HIV
on the healthcare professional as patient. Learning opportu-
nities should be provided to medical students across the
curriculum to address the dilemmas regarding HIV testing and
disclosure as it is important to self-care of physicians, patient
care, and to the practice of medicine. It is important that
medical educators create safe forums for students to discuss
their perspectives, feelings, and attitudes surrounding HIV

testing and disclosure, and to provide up-to-date information
regarding HIV transmission and rules governing when and
how to report possible transmission (e.g., needle sticks).
Furthermore, medical education should recognize the need to
teach students about caring for themselves in addition to
caring for patients. Most of our students participating in this
study had not thought about how their own health, or absence
of health, could affect patient care and their career choices as
physicians. By educating students about their own personal
health and well-being, we as medical educators have the
power to change the clinical environment, guiding our
students to become more professionally and personally
responsible for themselves and their patients, to seek help
and guidance without fear (e.g., to report a needle stick
without fear of being reprimanded by superiors), and to
recognize that disclosure in some instances is a moral
obligation to both patient and self. Although the sample size
was small, and the context of pre-clinical and clinical training

provided needed support in understanding the possible
differences among these student groups, this study gives
medical education a glimpse into what our future doctors think
about HIV testing and disclosure, and how difficult it is for
them to recognize that they can be patients too, conflicted by
professional and personal values and fearful of the conse-
quences in their professional lives. Medical education needs to
acknowledge that our future doctors may be or become
patients with a highly stigmatized disease, to create an
environment that neither discriminates patient nor profes-
sional, and to guide students in recognizing and resolving
conflicting personal and professional values and interests.
Declaration of interest: The authors report no conflicts of
interest. The authors alone are responsible for the content and
writing of this article.
Note
1. Anonymous testing uses code numbers to identify your test.
Your name is never used. You use the code to get your results.

e55
You are the only person who knows your results. With
anonymous testing, you have complete control in deciding
who to tell and when. With confidential testing, your name is
recorded and linked to your test results. Even though this
information is kept private, others may have access to this
information, including health care providers, your insurance
company, and the health department.
Notes on contributors
JULIE M. AULTMAN, PhD, is a Bioethicist and an Associate
Professor of
Behavioral Sciences at Northeastern Ohio Universities College
of Medicine
and Pharmacy.
NICOLE J. BORGES, PhD, is an Associate Professor in the
Department of
Community Health and Assistant Dean, Medical Education
Research and

Evaluation in the Office of Academic Affairs at the Boonshoft
School of
Medicine at Wright State University.
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e56
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Innovation - The European Journal of Social Science Research
Vol. 24, Nos. 1-2, March-June 2011, 199-208
GENERAL ARTICLE
Changing methods of disclosure. Literature review of disclosure

to children with terminal illnesses, including HIV
G. Anita Heeren*
Center for Health Behavior and Communication Research,
School of Medicine, University of Pennsylvania, Philadelphia,
Pennsylvania, USA
(Received 13 December 2010; final version received 22
December 2010)
More than 30 years after the first discovery of the deadly HIV
virus, and in the wake of increased knowledge of transmission,
treatment and behavioral intervention development, parents
are still faced with the difficult task of whether, when and how
to inform their child about her or his HIV status. Except for
some general ethical considerations, there are no national or
international guidelines available for handling HIV status
disclosure to a child by parents and health professionals. Most
studies on disclosure address the problem of stigma and the
barriers to disclosure of HIV-positive status by adults to their
sexual partners, caretakers, families and communities, but very
few studies focus on disclosure to HIV-positive children. The
majority of the studies that address disclosure to children limit
themselves to stipulating reasons for barriers to such disclosure
instead of the skills and knowledge necessary for effective
disclosure to a child. Increasing availability of therapy for HIV
across the world presses the issue of disclosure to the child.
Even so, disclosure for children who are HIV-positive due to
vertical transmission continues to be very difficult. There is a
lack of interventions that consider guidelines for healthcare
professionals, parents or persons involved with taking care of
HIV-positive children. These interventions should be designed
in an understanding manner towards the culture where they
might be implemented and be as appropriate in the view of
integrating different family structures and the child’s
development.
Keywords: HIV vertical transmission; disclosure; child; parent;

stigma
Introduction
It is estimated worldwide that 2.1 million children younger than
15 years of age are living with HIV. Of these 1.8 million
children are living in Sub-Saharan Africa. The number of newly
infected children worldwide is estimated to be 430 000, with an
estimated number of 390 000 children living in the Sub-Saharan
African countries. Over 7400 new HIV infections arose on a day
in 2008. More than 97% were in low- and middle-income
countries and about 1200 cases of infections were in children
under 15 years of age. Approximately 6200 were in adults aged
15 years and older, of whom almost 48% were women and about
40% were young people aged 15-24 years of age (UNAIDS
2009).
South Africa is experiencing one of the largest HIV epidemics
in the world. In
2006 about 29.1% of pregnant women attending government
antenatal clinics were
*Email: [email protected]
ISSN 1351-1610 print/ISSN 1469-8412 online
# 2011 Interdisciplinary Centre for Comparative Research in the
Social Sciences and ICCR Foundation DOI:
10.1080/13511610.2011.553506
http://www.informaworld.com
HIV-positive (National Department of Health, South Africa
2008). Vertical transmission has resulted in a large burden of
pediatric HIV disease and the reversal of gains achieved in
reducing child mortality (Horwood et al. 2010). In South Africa,
HIV causes over 40% of child deaths (Bradshaw et al., 2003).
HIV-related illness and deaths have had a devastating effect on

households and communities (Hosegood et al. 2007). Despite
the introduction of interventions to prevent mother to child
transmission of HIV (PMTCT), high vertical transmission rates
have been reported (Rollins et al. 2007). Although anti-
retroviral treatment is now available, only 61% of the estimated
94 000 children in need have received treatment (UNICEF 2008,
Orne- Gliemann et al. 2008).
Methodology
This review paper focuses on the published literature
concerning the problematic of disclosure to HIV-positive
children. I searched for the keywords ‘‘HIV’’, ‘‘positive’’,
‘‘vertical transmission’’, ‘‘disclosure’’ and ‘‘children’’, using
Pub-Med and the Gateway Library from 1970 to 2010. I
compared the results between first- and third-world countries
with the main focus on Sub-Saharan Africa.
Historical overview
Since the beginning of the 1970s there have been some positive
changes in regards to disclosure towards the terminally sick
child (Bluebond-Langner 1978, Instone 2000). Before the 1970s
it was believed that children would not understand the meaning
of a serious illness and death, because of their young age
(Spinetta 1980, Claflin and Barbarin 1991), and in most
instances they were not talked to directly. It was believed the
child needed to be protected against any harmful information.
Today it is widely accepted that disclosing to the child as early
as possible is better for the child’s development and increases
survival rates and cooperation from children (Gaylin and
Macklin 1982, Waechter 1973). Before the 1980s the main
subject of disclosure to children was cancer, which raises
different questions from the diagnosis of HIV (Spinetta and
Maloney 1975, 1978, Nagler et al. 1995, Schulte 2002). HIV
affects all age groups, from infants to old people (Bibace and

Walsh 1980, Turner et al. 1996, UNAIDS 2009). Following the
introduction of anti-viral therapy in the early 1990s, people are
surviving longer and children who are born HIV-positive can,
taking into consideration the availability of treatment
and medial adherence, lead a successful life (Domek
2010, Bachanas et al. 2001, Battles and Wiener 2002). As
treatment expands to HIV-infected children, health
professionals and parents, in most cases the HIV-positive
mother or the caregivers of the children, are increasingly faced
with the task of disclosing to the child (Wiener et al. 1998).
HIV-infected children under medical care are seldom informed
of their HIV-status, despite some evidence from industrialized
countries indicating that disclosure might have positive
psychosocial and clinical outcomes (Bachanas et al. 2001,
Wiener et al. 1998). Studies conducted in industrialized nations
indi- cate that the proportion of HIV-infected children who have
not had their HIV status disclosed ranges in the US from 25 to
45% (Cohen et al. 1997, Mellins et al. 2002, Nehring et al.
2000, Wiener et al. 1998), is as high as 75-82% in Europe
(Funck-Brentano et al. 1997, Lwin and Melvin 2001, Thorne et
al. 2000, No¨ stlinger and Colebunders 2006) and is 29% in
Uganda (Bikaako-Kajura et al., 2006). In the
(
200
G.A. Heeren
)
(
Innovation
-
The European Journal of Social Science Research
201
)
industrialized countries disclosure is influenced by the age of

the child, its cognitive development, perceived right to know
(Lester et al. 2002a, 2002b, Nehring et al. 2000), deteriorating
health status or questioning by the child. In the developing
countries disclosure is more often determined by concerns about
adherence to treatment, the level of cognitive development and
age. In general, disclosure across cultures seems to be
determined by the age of the child and the desire to protect the
child against harmful information.
Ethical considerations
Because there are as yet no clear guidelines on how to discuss
or disclose HIV status with an infected child, the consequences
of full disclosure to the child have not clearly been examined.
Studies differ as to whether a higher incidence of psychological
and behavioral problems occurs among children who have not
been told about their diagnosis vs. children who have been
formally told. There are difficulties around the issue of how to
talk to the child and what should be said, in addition to who
should talk to the child. The dilemma also occurs if the parent
refuses to tell the child that he or she is HIV-positive out of
fear of how the child might react or what the child might say, or
that the child might talk to others, which might lead to gossip.
Another reason is fear of blame, or stigma and isolation. The
health professional might respect the parents’ wish not to
inform the child despite knowing that the child has become
sexually active. The ethical responsibility is questionable for
either side (Kietzman 2008).
The doctor-patient ratio is much higher in developed countries
than in developing countries. Therefore, the issue of disclosure
might be handled differently
in different parts of the world. In the Western world, with
sufficient medical professionals, psychologists and social
workers, there is more time to spend with a single patient than
in the developing countries, where there is a lack of health
professionals. The disclosure process might very often be

processed by a specially trained nurse rather than a doctor and
is less likely to be accompanied by a psychologist.
Since more children will be born who are HIV-positive, it is
crucial that guidelines are developed for concepts on how to
disclose, not only for health professionals but also to assist
parents and caretakers. This is important because they live with
the child and have daily contact with her or him. In countries
with less medical resources and fewer health professionals, it
might not be practical for medical doctors to take the time
needed to appropriately disclose to the child. Guidelines for
health professionals and parents on how and when to disclose
are urgently needed (Kietzman 2008).
Informed by whom?
One question that seems to play an important role in Western
society concerns who should inform the child. Typically
clinicians have assumed the responsibility of informing the
child about the disease, believing that they have the right to do
so because they have the knowledge (Kietzman 2008). This
assumption has been questioned in Africa, where most parents
and caretakers believe that they are the best person to talk to the
child (Wiener 1996, Lester et al. 2002a, 2002b, Moodley et al.
2006, Lesch et al. 2007). In this context, therefore, the parent
should be an important
target for guidance about the disease, infection, transmission,
diagnosis, symptoms and treatment. Without this combination of
knowledge and skill, the parent can feel disempowered and
refuse to talk to the child while the child might be getting older
and engaging in risky sexual activities without knowing the
risks. As a consequence, the uninformed child may unknowingly
infect others (Kietzman 2008). Interventions in Southern Africa
should, therefore, focus on empowering the parents, in addition
to health professionals, in order to more effectively affect the

behavior of HIV- positive children.
Age of child
At the beginning of the 1990s the question was no longer
whether the child should be told, but rather ‘‘how and when
should the child be told’’ (Lester et al. 2002a, 2002b, Kietzman
2008). Very often parents try to prevent the child from learning
the diagnosis of HIV. Most parents delay disclosure until the
age of around 10 years and prefer not to use the term HIV or
AIDS in the presence of the child. About 50% of parents believe
that disclosure should occur before the age of 12 (Blasini et al.
2004). The researchers argue that providing such information as
early as possible is critical for the development of the child and
that requisite programs need to be developed that are age-
appropriate for the child.
Reasons and barriers to disclosure
Domek (2010) examines reasons for disclosure and non-
disclosure as well as the benefit of both. Domek suggests that it
is important to understand the major barriers to disclosure and
the fear associated with disclosure in order to develop
appropriate guidelines to prepare the HIV-positive child for the
future. In this regard it might be useful to have a multi-
professional team to assist the caregiver by adapting the
disclosure discussion in order to meet the developmental phases
of the child.
I found only five publications by authors published in
Sub-Saharan Africa studies (Abad´ıa-Barrero and Larusso
2006, Bikaako-Kajura et al. 2006, Kouyoumdjian et al. 2005,
Myer et al. 2006, Oberdorfer et al., 2006). They try to better
understand the problematic issues around disclosure to an HIV-
positive child (Flanagan-Klygis et al. 2001).
Most studies do not specify the mode of pediatric HIV
acquisition (Vaz et al. 2008, Kouyoumdjian et al. 2005, Myer et

al. 2006). In South Africa, one study conducted using semi-
structured interviews with 40 health professionals found that
50% had talked to the patients, but only 18% were involved in
the disclosure with the child. The health professionals believed
that disclosure should start before the children were attending
school and that children would be able to understand the
meaning of their infection around the age of 10. They felt that
the best person to tell the child would be the parent or
caretaker, who should be supported by a health professional
with biomedical information. They felt that there was a need for
emotional support for the parents and their children (Myer et al.
2006).
Kouyoumdjian et al. (2005) explored in a South African study
the reasons for disclosure or non-disclosure among parents or
caregivers. Seventeen parents and caregivers participated in
focus group discussions. Some of the reasons for non-
disclosure were identified, including: fear of stigma, which
often leads to discrimina-
tion, social rejection and isolation for the child; fear of being
judged by the child; not having enough information to explain
the diagnosis or answer questions; the perception that the child
is too young to understand and might tell others; and disclosure
being seen as an emotional and/or psychological challenge for
the parent or the caregiver.
In Congo, Vaz et al. (2008), conducted semi-structured
interviews with 19 youth and 21 caregivers. The youth had been
informed about their status and the caregivers had disclosed to
their children. The youth were an average of 15 years old at the
time of disclosure. They felt that it was best to know their
status because they were then able to understand why they
needed to take medication. For most of them it was necessary to
lead a healthy and better life. It was felt that there was a need to
assist the parent and the child to understand the disease better
to be able to protect themselves and others and to stay healthy.

The researchers suggested that programs needed to be developed
for the population and should address the psychosocial needs of
both the children and the caregivers.
Vaz et al. (2010) report in another study the results of
interviews with eight caregiver-child dyads in Kinshasa, Congo.
All of the children had previously been informed about their
status and they ranged in ages between 8 and 17 years. Their
caregivers had informed all but one child. From the viewpoint
of the children, they were never talked to directly by their
health professional, only by their caregivers. The children
reported that in most cases they had been told that they suffered
from malaria, rather than HIV. The actual disclosure seemed to
have happened at a one time rather than over time and
appropriate to the age of the child. The children were left alone
with their fear and not informed about the disease and the
meaning of adherence to treatment (Vaz et al. 2010).
Stigma
One of the many reasons why disclosure is such a problem in
African society is stigma. Stigma is associated with risky
behavior having led to infection, which is considered avoidable
(Schulte 2002, Maman et al. 2009). Unfortunately this is linked
to behaviors such as drug use, promiscuity, homosexuality and
transactional sex (Simbayi et al. 2007). The fear of stigma is
very real in African society since it influences people’s
behavior towards others, including gossiping and attaching
negative terms to the person (Sherman et al. 2000, Uys et al.
2005).
One of the barriers to informing the child that it is HIV-positive
is the fear that the child might tell others such as friends,
neighbors or people at the school. This would most likely result
in stigma for the family or caregiver. This is especially the case
when the parent is HIV-positive, and also depends on the stage
of the disease of the parent, which determines their ability to
talk to the child (Gaylin and Macklin 1982, Wiener et al. 1998,

Gerson et al. 2001, Visser et al. 2008, Horwood et al. 2010).
Most of the time the health professionals and parents prefer to
prevent any direct conversation about the disease with the child
(Vaz et al. 2010). The parents may fear that the child might
conclude that he or she had done something wrong or that it
must be the fault of the parent that the child is HIV-positive.
HIV-positive mothers often feel guilty that they did not protect
the child against infection. Moodley et al. (2006) comes to the
conclusion that guidelines are needed for healthcare profes-
sionals and parents to assist the parents and guide the children.
Corneli et al. (2009) conducted a study in Congo; they
interviewed 19 youth, 36 parents and caregivers and 17 health
professionals about the role of disclosure. All participants knew
their status, and they believed that most youth wanted to be
informed about their status to protect themselves and not to
transmit the illness to others. They also felt that it made it
easier for them to adhere to medication, knowing and
understanding the disease. The parents felt that the child had the
right to know. In this group, the age of the usual disclosure was
between 11 and 15 years. They thought that more information
needed to be carefully designed to help children learn their
status. The greatest fear was that the child would respond with
depression, sadness, worry and fear of death.
Nam et al. (2009) interviewed 32 people, of whom 21 were
parents, in Botswana, aged around 37 years and their children,
aged 5-18 (those aged B5 years were not included) about their
reasons for disclosure and non-disclosure. The main reason for
the parent to disclose was their own HIV-positive status and
when they became sick.
The reaction of the children was generally supportive. The
reason for non-disclosure was the age of the child, the fear that
it would be too painful and the fear of stigma. Generally, sexual
health would not be discussed with the parent as it was seen as
inappropriate. The suggestion was made that intervention was

needed to assist parents and that these interventions needed to
be culturally appropriate. No intervention or other
developments were suggested.
Campbell et al. (2005) conducted a case study in South Africa;
they interviewed 44 people and additionally held focus group
sessions. They also used diaries. The main problem mentioned
with regard to disclosure was the fear of stigma: this is
connected with sex, sin and immorality. Some mothers said: ‘‘I
have an evil child in the house’’. Sick family members would
hide. The main problem was still that people died from anything
else but AIDS. They understood that the main problem lay in
intergenerational communication. The solution they saw was
further education and communication within the community. No
concept was offered.
Moodley et al. (2006) conducted semi-structured interviews in
South Africa with 174 parents; the mean age of the participants
was 33 (17-73), 91% were female and 176 were children aged
about 11. The parents believed that the best age to disclose
would be around 12 years of age. The parents believed strongly
that the child has the ‘‘right to know’’. Some 83% of the
participants believed that the parent or caregiver is the best
person to disclose, with only 16% feeling that the healthcare
provider should tell the child. Generally they would have liked
to see doctors being involved in the process of disclosure, but
understood that the lack of time did not allow this. There was a
general fear that the child would discuss the infection with
people outside the family. No program was developed or
suggested.
Lesch et al. (2007) examined the South African literature, which
focused on pediatric disclosure by health professionals vs.
parents. The health professionals supported disclosure over
several steps. They saw it as unethical when non-disclosure is
chosen. Conversely, most parents wanted to protect their child
against painful information and often supported partial
disclosure. The reason for non-disclosure was generally given
as fear of stigma and accidental disclosure.

Intervention studies
There is a dearth of research describing the development and
evaluation of interventions to facilitate disclosure. The only
published disclosure model we found
was by Blasini et al. (2004). They evaluated a disclosure model
for pediatric patients living with HIV in Puerto Rico. In this
model 16 health professionals, 39 parents and caregivers and 40
children participated. The group of researchers, a
multidisciplinary scientific team, developed first semi-
structured interviews and from these results designed an
intervention, which was led with structured interviews.
With these results they developed an intervention to address
many of the barriers to open communication about pediatric
HIV. Their five-step intervention targeting providers,
caregivers, and HIV-positive children involves:
(1) training sessions for health professionals in developmentally
appropriate disclosure;
(2) caregiver educational sessions and peer support groups;
(3) child assessment sessions throughout the process;
(4) combined family and staff disclosure sessions; and
(5) post-disclosure family groups for education and support.
The researchers took into consideration the following important
issues in their intervention development:
(1) age and development of the child;
(2) cultural factors that influence communication as well as
concepts of illness and death;
(3) family variables;
(4) quantity and quality of social support;
(5) mental health; and
(6) a child’s neurological and cognitive functioning.

The investigators reported that their intervention model
promotes healthy psychological adjustment and better
adherence in children. Six months follow-up, post- disclosure,
70% of the participating youths endorsed feeling ‘‘normal’’ and
parents and caregivers reported that approximately 58% had
improved adherence. Although the majority of youths (85%)
and caregivers (97%) thought the disclosure was a positive
event, and many youth felt more supported by parents (58%),
grand- parents (48%), clinic staff (48%) and others as a result
of the intervention, there was not a comparison group with
which to measure these results.
Discussion
In summarizing the review of the literature one can conclude
that most studies are reports on what has been done. These are
mainly focus group sessions and semi-structured interviews. No
intervention concept has been developed on how to disclose to a
child. In the industrialized world, the impression is that the
clinicians have the best answer to the problem and should be the
persons to talk to the child, because they have the best
knowledge about the clinical development of the disease. In
African society the parent or the caretaker is seen as the best
person to tell the child. The parent might ask a health
professional for assistance with the disclosure, but the first
person should always be the parent. Guidelines should be
developed for disclosure for health professionals, parents and
caregivers. Studies have shown that children who know their
status develop with fewer problems and have a better
understanding of why they have to take medicine. Adherence is
much higher among these children (Wiener et al. 1998). Many
parents also argue that the child has a right to know and needs
to be encouraged to lead a normal life, and to be able to protect

him- or herself in the future (Corneli et al. 2009). An
intervention needs to focus on the benefit and the welfare of the
child and the goal needs to be to have an understanding of what
is best for the child. Programs need to consider the cultural
circumstances, and the abilities and developmental stages of the
child and the parent. Perhaps the best question to guide those
interested in developing the guidelines that we are here
proposing is: ‘‘How can we learn to see through the eyes of the
child? How can we learn how children feel and think?’’
Suggestions for disclosure for the child could be developing
guidelines for health professionals to assist parents in the steps
to disclose to the child. This cannot be a single step and needs
to be age- appropriate, considering the development of the child
and the skill level of the parents and caregivers. On the other
hand the child should be part of the
development since it is the child we have to lead into a positive
future.
References
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model versus a developmental illness experience model for
children and adolescents living with HIV/AIDS in Sa˜o Paulo,
Brazil. AIDS patient care STDS, 20 (1), 36-43.
Arun, S., Singh, A.K., Lodha, R., and Kabra, S.K., 2009.
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Innovation - The European Journal of Social Science Research
Vol. 24, Nos. 1-2, March-June 2011, 199-208
GENERAL ARTICLE
Changing methods of disclosure. Literature review of disclosure
to children with terminal illnesses, including HIV
G. Anita Heeren*
Center for Health Behavior and Communication Research,
School of Medicine, University of Pennsylvania, Philadelphia,
Pennsylvania, USA
(Received 13 December 2010; final version received 22
December 2010)
More than 30 years after the first discovery of the deadly HIV
virus, and in the wake of increased knowledge of transmission,
treatment and behavioral intervention development, parents
are still faced with the difficult task of whether, when and how
to inform their child about her or his HIV status. Except for
some general ethical considerations, there are no national or
international guidelines available for handling HIV status
disclosure to a child by parents and health professionals. Most
studies on disclosure address the problem of stigma and the
barriers to disclosure of HIV-positive status by adults to their
sexual partners, caretakers, families and communities, but very
few studies focus on disclosure to HIV-positive children. The
majority of the studies that address disclosure to children limit
themselves to stipulating reasons for barriers to such disclosure
instead of the skills and knowledge necessary for effective

disclosure to a child. Increasing availability of therapy for HIV
across the world presses the issue of disclosure to the child.
Even so, disclosure for children who are HIV-positive due to
vertical transmission continues to be very difficult. There is a
lack of interventions that consider guidelines for healthcare
professionals, parents or persons involved with taking care of
HIV-positive children. These interventions should be designed
in an understanding manner towards the culture where they
might be implemented and be as appropriate in the view of
integrating different family structures and the child’s
development.
Keywords: HIV vertical transmission; disclosure; child; parent;
stigma
Introduction
It is estimated worldwide that 2.1 million children younger than
15 years of age are living with HIV. Of these 1.8 million
children are living in Sub-Saharan Africa. The number of newly
infected children worldwide is estimated to be 430 000, with an
estimated number of 390 000 children living in the Sub-Saharan
African countries. Over 7400 new HIV infections arose on a day
in 2008. More than 97% were in low- and middle-income
countries and about 1200 cases of infections were in children
under 15 years of age. Approximately 6200 were in adults aged
15 years and older, of whom almost 48% were women and about
40% were young people aged 15-24 years of age (UNAIDS
2009).
South Africa is experiencing one of the largest HIV epidemics
in the world. In
2006 about 29.1% of pregnant women attending government
antenatal clinics were
*Email: [email protected]
ISSN 1351-1610 print/ISSN 1469-8412 online

# 2011 Interdisciplinary Centre for Comparative Research in the
Social Sciences and ICCR Foundation DOI:
10.1080/13511610.2011.553506
http://www.informaworld.com
HIV-positive (National Department of Health, South Africa
2008). Vertical transmission has resulted in a large burden of
pediatric HIV disease and the reversal of gains achieved in
reducing child mortality (Horwood et al. 2010). In South Africa,
HIV causes over 40% of child deaths (Bradshaw et al., 2003).
HIV-related illness and deaths have had a devastating effect on
households and communities (Hosegood et al. 2007). Despite
the introduction of interventions to prevent mother to child
transmission of HIV (PMTCT), high vertical transmission rates
have been reported (Rollins et al. 2007). Although anti-
retroviral treatment is now available, only 61% of the estimated
94 000 children in need have received treatment (UNICEF 2008,
Orne- Gliemann et al. 2008).
Methodology
This review paper focuses on the published literature
concerning the problematic of disclosure to HIV-positive
children. I searched for the keywords ‘‘HIV’’, ‘‘positive’’,
‘‘vertical transmission’’, ‘‘disclosure’’ and ‘‘children’’, using
Pub-Med and the Gateway Library from 1970 to 2010. I
compared the results between first- and third-world countries
with the main focus on Sub-Saharan Africa.
Historical overview
Since the beginning of the 1970s there have been some positive
changes in regards to disclosure towards the terminally sick
child (Bluebond-Langner 1978, Instone 2000). Before the 1970s
it was believed that children would not understand the meaning

of a serious illness and death, because of their young age
(Spinetta 1980, Claflin and Barbarin 1991), and in most
instances they were not talked to directly. It was believed the
child needed to be protected against any harmful information.
Today it is widely accepted that disclosing to the child as early
as possible is better for the child’s development and increases
survival rates and cooperation from children (Gaylin and
Macklin 1982, Waechter 1973). Before the 1980s the main
subject of disclosure to children was cancer, which raises
different questions from the diagnosis of HIV (Spinetta and
Maloney 1975, 1978, Nagler et al. 1995, Schulte 2002). HIV
affects all age groups, from infants to old people (Bibace and
Walsh 1980, Turner et al. 1996, UNAIDS 2009). Following the
introduction of anti-viral therapy in the early 1990s, people are
surviving longer and children who are born HIV-positive can,
taking into consideration the availability of treatment
and medial adherence, lead a successful life (Domek
2010, Bachanas et al. 2001, Battles and Wiener 2002). As
treatment expands to HIV-infected children, health
professionals and parents, in most cases the HIV-positive
mother or the caregivers of the children, are increasingly faced
with the task of disclosing to the child (Wiener et al. 1998).
HIV-infected children under medical care are seldom informed
of their HIV-status, despite some evidence from industrialized
countries indicating that disclosure might have positive
psychosocial and clinical outcomes (Bachanas et al. 2001,
Wiener et al. 1998). Studies conducted in industrialized nations
indi- cate that the proportion of HIV-infected children who have
not had their HIV status disclosed ranges in the US from 25 to
45% (Cohen et al. 1997, Mellins et al. 2002, Nehring et al.
2000, Wiener et al. 1998), is as high as 75-82% in Europe
(Funck-Brentano et al. 1997, Lwin and Melvin 2001, Thorne et
al. 2000, No¨ stlinger and Colebunders 2006) and is 29% in
Uganda (Bikaako-Kajura et al., 2006). In the
(
200

G.A. Heeren
)
(
Innovation
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The European Journal of Social Science Research
201
)
industrialized countries disclosure is influenced by the age of
the child, its cognitive development, perceived right to know
(Lester et al. 2002a, 2002b, Nehring et al. 2000), deteriorating
health status or questioning by the child. In the developing
countries disclosure is more often determined by concerns about
adherence to treatment, the level of cognitive development and
age. In general, disclosure across cultures seems to be
determined by the age of the child and the desire to protect the
child against harmful information.
Ethical considerations
Because there are as yet no clear guidelines on how to discuss
or disclose HIV status with an infected child, the consequences
of full disclosure to the child have not clearly been examined.
Studies differ as to whether a higher incidence of psychological
and behavioral problems occurs among children who have not
been told about their diagnosis vs. children who have been
formally told. There are difficulties around the issue of how to
talk to the child and what should be said, in addition to who
should talk to the child. The dilemma also occurs if the parent
refuses to tell the child that he or she is HIV-positive out of
fear of how the child might react or what the child might say, or
that the child might talk to others, which might lead to gossip.
Another reason is fear of blame, or stigma and isolation. The

health professional might respect the parents’ wish not to
inform the child despite knowing that the child has become
sexually active. The ethical responsibility is questionable for
either side (Kietzman 2008).
The doctor-patient ratio is much higher in developed countries
than in developing countries. Therefore, the issue of disclosure
might be handled differently
in different parts of the world. In the Western world, with
sufficient medical professionals, psychologists and social
workers, there is more time to spend with a single patient than
in the developing countries, where there is a lack of health
professionals. The disclosure process might very often be
processed by a specially trained nurse rather than a doctor and
is less likely to be accompanied by a psychologist.
Since more children will be born who are HIV-positive, it is
crucial that guidelines are developed for concepts on how to
disclose, not only for health professionals but also to assist
parents and caretakers. This is important because they live with
the child and have daily contact with her or him. In countries
with less medical resources and fewer health professionals, it
might not be practical for medical doctors to take the time
needed to appropriately disclose to the child. Guidelines for
health professionals and parents on how and when to disclose
are urgently needed (Kietzman 2008).
Informed by whom?
One question that seems to play an important role in Western
society concerns who should inform the child. Typically
clinicians have assumed the responsibility of informing the
child about the disease, believing that they have the right to do
so because they have the knowledge (Kietzman 2008). This
assumption has been questioned in Africa, where most parents
and caretakers believe that they are the best person to talk to the
child (Wiener 1996, Lester et al. 2002a, 2002b, Moodley et al.
2006, Lesch et al. 2007). In this context, therefore, the parent

should be an important
target for guidance about the disease, infection, transmission,
diagnosis, symptoms and treatment. Without this combination of
knowledge and skill, the parent can feel disempowered and
refuse to talk to the child while the child might be getting older
and engaging in risky sexual activities without knowing the
risks. As a consequence, the uninformed child may unknowingly
infect others (Kietzman 2008). Interventions in Southern Africa
should, therefore, focus on empowering the parents, in addition
to health professionals, in order to more effectively affect the
behavior of HIV- positive children.
Age of child
At the beginning of the 1990s the question was no longer
whether the child should be told, but rather ‘‘how and when
should the child be told’’ (Lester et al. 2002a, 2002b, Kietzman
2008). Very often parents try to prevent the child from learning
the diagnosis of HIV. Most parents delay disclosure until the
age of around 10 years and prefer not to use the term HIV or
AIDS in the presence of the child. About 50% of parents believe
that disclosure should occur before the age of 12 (Blasini et al.
2004). The researchers argue that providing such information as
early as possible is critical for the development of the child and
that requisite programs need to be developed that are age-
appropriate for the child.
Reasons and barriers to disclosure
Domek (2010) examines reasons for disclosure and non-
disclosure as well as the benefit of both. Domek suggests that it
is important to understand the major barriers to disclosure and
the fear associated with disclosure in order to develop
appropriate guidelines to prepare the HIV-positive child for the

future. In this regard it might be useful to have a multi-
professional team to assist the caregiver by adapting the
disclosure discussion in order to meet the developmental phases
of the child.
I found only five publications by authors published in
Sub-Saharan Africa studies (Abad´ıa-Barrero and Larusso
2006, Bikaako-Kajura et al. 2006, Kouyoumdjian et al. 2005,
Myer et al. 2006, Oberdorfer et al., 2006). They try to better
understand the problematic issues around disclosure to an HIV-
positive child (Flanagan-Klygis et al. 2001).
Most studies do not specify the mode of pediatric HIV
acquisition (Vaz et al. 2008, Kouyoumdjian et al. 2005, Myer et
al. 2006). In South Africa, one study conducted using semi-
structured interviews with 40 health professionals found that
50% had talked to the patients, but only 18% were involved in
the disclosure with the child. The health professionals believed
that disclosure should start before the children were attending
school and that children would be able to understand the
meaning of their infection around the age of 10. They felt that
the best person to tell the child would be the parent or
caretaker, who should be supported by a health professional
with biomedical information. They felt that there was a need for
emotional support for the parents and their children (Myer et al.
2006).
Kouyoumdjian et al. (2005) explored in a South African study
the reasons for disclosure or non-disclosure among parents or
caregivers. Seventeen parents and caregivers participated in
focus group discussions. Some of the reasons for non-
disclosure were identified, including: fear of stigma, which
often leads to discrimina-
tion, social rejection and isolation for the child; fear of being
judged by the child; not having enough information to explain
the diagnosis or answer questions; the perception that the child
is too young to understand and might tell others; and disclosure

being seen as an emotional and/or psychological challenge for
the parent or the caregiver.
In Congo, Vaz et al. (2008), conducted semi-structured
interviews with 19 youth and 21 caregivers. The youth had been
informed about their status and the caregivers had disclosed to
their children. The youth were an average of 15 years old at the
time of disclosure. They felt that it was best to know their
status because they were then able to understand why they
needed to take medication. For most of them it was necessary to
lead a healthy and better life. It was felt that there was a need to
assist the parent and the child to understand the disease better
to be able to protect themselves and others and to stay healthy.
The researchers suggested that programs needed to be developed
for the population and should address the psychosocial needs of
both the children and the caregivers.
Vaz et al. (2010) report in another study the results of
interviews with eight caregiver-child dyads in Kinshasa, Congo.
All of the children had previously been informed about their
status and they ranged in ages between 8 and 17 years. Their
caregivers had informed all but one child. From the viewpoint
of the children, they were never talked to directly by their
health professional, only by their caregivers. The children
reported that in most cases they had been told that they suffered
from malaria, rather than HIV. The actual disclosure seemed to
have happened at a one time rather than over time and
appropriate to the age of the child. The children were left alone
with their fear and not informed about the disease and the
meaning of adherence to treatment (Vaz et al. 2010).
Stigma
One of the many reasons why disclosure is such a problem in
African society is stigma. Stigma is associated with risky
behavior having led to infection, which is considered avoidable
(Schulte 2002, Maman et al. 2009). Unfortunately this is linked
to behaviors such as drug use, promiscuity, homosexuality and

transactional sex (Simbayi et al. 2007). The fear of stigma is
very real in African society since it influences people’s
behavior towards others, including gossiping and attaching
negative terms to the person (Sherman et al. 2000, Uys et al.
2005).
One of the barriers to informing the child that it is HIV-positive
is the fear that the child might tell others such as friends,
neighbors or people at the school. This would most likely result
in stigma for the family or caregiver. This is especially the case
when the parent is HIV-positive, and also depends on the stage
of the disease of the parent, which determines their ability to
talk to the child (Gaylin and Macklin 1982, Wiener et al. 1998,
Gerson et al. 2001, Visser et al. 2008, Horwood et al. 2010).
Most of the time the health professionals and parents prefer to
prevent any direct conversation about the disease with the child
(Vaz et al. 2010). The parents may fear that the child might
conclude that he or she had done something wrong or that it
must be the fault of the parent that the child is HIV-positive.
HIV-positive mothers often feel guilty that they did not protect
the child against infection. Moodley et al. (2006) comes to the
conclusion that guidelines are needed for healthcare profes-
sionals and parents to assist the parents and guide the children.
Corneli et al. (2009) conducted a study in Congo; they
interviewed 19 youth, 36 parents and caregivers and 17 health
professionals about the role of disclosure. All participants knew
their status, and they believed that most youth wanted to be
informed about their status to protect themselves and not to
transmit the illness to others. They also felt that it made it
easier for them to adhere to medication, knowing and
understanding the disease. The parents felt that the child had the
right to know. In this group, the age of the usual disclosure was
between 11 and 15 years. They thought that more information
needed to be carefully designed to help children learn their
status. The greatest fear was that the child would respond with

depression, sadness, worry and fear of death.
Nam et al. (2009) interviewed 32 people, of whom 21 were
parents, in Botswana, aged around 37 years and their children,
aged 5-18 (those aged B5 years were not included) about their
reasons for disclosure and non-disclosure. The main reason for
the parent to disclose was their own HIV-positive status and
when they became sick.
The reaction of the children was generally supportive. The
reason for non-disclosure was the age of the child, the fear that
it would be too painful and the fear of stigma. Generally, sexual
health would not be discussed with the parent as it was seen as
inappropriate. The suggestion was made that intervention was
needed to assist parents and that these interventions needed to
be culturally appropriate. No intervention or other
developments were suggested.
Campbell et al. (2005) conducted a case study in South Africa;
they interviewed 44 people and additionally held focus group
sessions. They also used diaries. The main problem mentioned
with regard to disclosure was the fear of stigma: this is
connected with sex, sin and immorality. Some mothers said: ‘‘I
have an evil child in the house’’. Sick family members would
hide. The main problem was still that people died from anything
else but AIDS. They understood that the main problem lay in
intergenerational communication. The solution they saw was
further education and communication within the community. No
concept was offered.
Moodley et al. (2006) conducted semi-structured interviews in
South Africa with 174 parents; the mean age of the participants
was 33 (17-73), 91% were female and 176 were children aged
about 11. The parents believed that the best age to disclose
would be around 12 years of age. The parents believed strongly
that the child has the ‘‘right to know’’. Some 83% of the
participants believed that the parent or caregiver is the best
person to disclose, with only 16% feeling that the healthcare
provider should tell the child. Generally they would have liked
to see doctors being involved in the process of disclosure, but

understood that the lack of time did not allow this. There was a
general fear that the child would discuss the infection with
people outside the family. No program was developed or
suggested.
Lesch et al. (2007) examined the South African literature, which
focused on pediatric disclosure by health professionals vs.
parents. The health professionals supported disclosure over
several steps. They saw it as unethical when non-disclosure is
chosen. Conversely, most parents wanted to protect their child
against painful information and often supported partial
disclosure. The reason for non-disclosure was generally given
as fear of stigma and accidental disclosure.
Intervention studies
There is a dearth of research describing the development and
evaluation of interventions to facilitate disclosure. The only
published disclosure model we found
was by Blasini et al. (2004). They evaluated a disclosure model
for pediatric patients living with HIV in Puerto Rico. In this
model 16 health professionals, 39 parents and caregivers and 40
children participated. The group of researchers, a
multidisciplinary scientific team, developed first semi-
structured interviews and from these results designed an
intervention, which was led with structured interviews.
With these results they developed an intervention to address
many of the barriers to open communication about pediatric
HIV. Their five-step intervention targeting providers,
caregivers, and HIV-positive children involves:
(1) training sessions for health professionals in developmentally
appropriate disclosure;
(2) caregiver educational sessions and peer support groups;
(3) child assessment sessions throughout the process;
(4) combined family and staff disclosure sessions; and

2011; 33 e50–e56WEB PAPERThe ethics of HIV testing an.docx

2011; 33 e50–e56WEB PAPERThe ethics of HIV testing an.docx

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2011; 33 e50–e56WEB PAPERThe ethics of HIV testing an.docx