In your initial post, explain how the APA Ethical Principles and Code of Conduct can be used to guide decisions in this ethically complex situation. Provide a suggested course of action for the clinic staff. Given the daughter’s age and the situation presented, integrate concepts developed from different psychological content domains to support your suggested course of action. Be certain to use evidence-based psychological concepts and theories to support your arguments. You may wish to consider the following questions as you construct your post.

• Does the daughter have a right to know her diagnosis?
• Does the mother have a right to not disclose the diagnosis to her daughter?
• Does the mother have a right to privacy regarding her own diagnosis, which could be threatened if her daughter learns of her own status?
• Should the staff tell the daughter if the mother does not want her to know?
• If the daughter wants to know more about her condition, what should the staff say?
• Are there other approaches the staff can take? If so, what are they?
• Is further information required in order for you to create an ethically sound suggested course of action?

 

https://www.apa.org/ethics/code/index

 

http://library.ashford.edu/EzProxy.aspx?url=http://search.ebscohost.com.proxy-library.ashford.edu/login.aspx?direct=true&AuthType=ip,cpid&custid=s8856897&db=a9h&AN=73981877&site=ehost-live

PSY699:Master of Arts in Psychology Capstone

Week Four Discussion Case File

Case Summary
Client 1: Tina, a 36-year-old HIV-positive Latina woman

Client 2: Tina’s daughter, 12-year-old Victoria (also HIV positive)

Tina became infected through a former boyfriend who had a history of intravenous drug use.

Tina gave birth to an HIV-positive daughter, Victoria. Tina does not want Victoria to know that

either of them has HIV.

Victoria is now 12 years old and has been told by her mother that she takes medications for “a

problem in her blood.” Recently, Victoria stated that she does not like taking the medication and

occasionally misses doses. The clinic staff has raised the issue of whether Victoria should be told

about her diagnosis. They’ve warned Tina that in the near future, Victoria will be at an age at

which girls often become more interested in boys or sexual behavior. The clinic’s therapist feels

that if Victoria knew her diagnosis she might be more adherent to her regimen of medications.

However, Tina absolutely does not want her daughter to know. Tina believes Victoria is still too

young and will be emotionally devastated. Tina believes that it is her responsibility — and only

her responsibility as a mother — to “protect” her child, and that her daughter is “not ready” to

know. Tina also believes that Victoria is “a good girl” and will not be sexually active until she is

married.

The clinic’s therapist thinks Tina’s guilt about having transmitted the virus to her daughter is

causing her to take this stance. Still, the clinic staff is concerned and wants Tina to reconsider.

This situation presents several ethical dilemmas and requires further consultation.

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:

jmaultma@neoucom.edu

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

The ethics of HIV testing and disclosure

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).

J. M. Aultman & N. J. Borges

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.

The ethics of HIV testing and disclosure

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.

References

Angell M. 1991. A dual approach to the AIDS epidemic. New Engl J Med

324:1498–1500.

Blumenreich GA. 1993 [Internet]. The law and the AIDS-infected healthcare

worker. American Medical Association Legal Briefs. Available from:

http://www.aana.com/Resources.aspx?ucNavMenu_TSMenuTargetID=54

&ucNavMenu_TSMenuTargetType=4&ucNavMenu_TSMenuID=6&id=

2411&

Center for Disease Control 2005 [Internet]. Current Status of HIV Infection

Surveillance, January 2005. [Accessed 2008 November 11]. Available

from: http://www.hhs.gov/asl/testify/t050623a.html

Center for Disease Control 2006 [Internet]. MMWR Reports. 55(RR14):1–17.

[Accessed 2008 November 11]. Available from: http://www.cdc.gov/

mmwr/preview/mmwrhtml/rr5514a1.htm?s_cid=

D’Amelio R, Tuerlings E, Perito O, Biselli R, Natalicchio S, Kingma S. 2001.

A global review of legislation on HIV/AIDS: The issue of HIV testing.

JAIDS 28:173–179.

Dixon-Mueller R. 2007. The sexual ethics of HIV testing and the rights and

responsibilities of partners. Stud Fam Plann 38:284–296.

Evans JK, Bingham JS, Prat K, Carne CA. 1993. Attitudes of medical students

to HIV and AIDS. Genitourin Med 69(5):377–380.

Fost N. 2000. Patient access to information on clinicians infected with

blood-borne pathogens. J Am Med Assoc 284:1696–1698.

Galletly CL, Pinkerton SD, Petroll AE. 2008. CDC recommendations for opt-

out testing and reactions to unanticipated HIV diagnoses. AIDS Patient

Care STDS 22:189–193.

Gerberding JL. 1996. The infected healthcare provider. New Engl J Med

334:594–595.

Gostin LA. 2000. Proposed national policy on health care workers living

with HIV/AIDS and other blood-borne pathogens. J Am Med Assoc

284:1965–1970.

Gostin LA. 2002. Rights and duties of HIV infected health care profes-

sionals. Health Care Anal 10:67–85.

Kagan I, Ovadia KL, Kaneti T. 2008. Physicians’ and nurses’ views on

infected health care workers. Nurs Ethics 15:573–585.

LeBlanc B. 2002 [Internet]. Does the duty to disclose include personal

disclosure by professionals? Professional practice and liability on the

net, 4(1). [Accessed 2008 November 11]. Available from: http://

www.sml-law.com/publications/newsletters-detail.asp?DocID=2326

Li L, Wu Z, Wu S, Lee SJ, Rotheram-Borus MJ, Detels R, Jia M, Sun S. 2007.

Mandatory HIV testing in China: The perception of health-care

providers. Int J STD AIDS 18(7):476–481.

Perry JL, Pearson RD, Jagger J. 2006. Infected health care workers and

patient safety: A double standard. Am J Infect Control 34:313–319.

Shernoff M. 1996. Physicians living with HIV/AIDS. J Int Assoc Physicians

AIDS Care 2(11). [Accessed 2008 November 13]. Available from: http://

www.thebody.com/content/art2467.html

Tesoriero JM, Battles HB, Heavner K, Leung SY, Nemeth C, Pulver W,

Birkhead GS. 2008. The effect of name-reporting and partner notifica-

tion on HIV testing in New York state. Am J Public Health 98:728–735.

Tuboku-Metzger J, Chiarello L, Sinkowitz-Cochran RL, Casano-Dickerson A,

Cardo D. 2005. Public attitudes and opinions toward physicians and

dentists infected with bloodborne viruses: Results of a national survey.

Am J Infect Control 33:299–303.

Weiss ES, Makary MA, Wang T, Syin D, Pronovost PJ, Chang D, Cornwell

EE. 2005. Prevalence of blood-borne pathogens in an urban, university-

based general surgical practice. Ann Surg 241:803–319.

J. M. Aultman & N. J. Borges
e56

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Ethnic differences in HIV-disclosure and sexual risk

Jason D.P. Bird
a
*, David D. Fingerhut

a,b

and David J. McKirnan

a,b

a
Department of Research, Howard Brown Health Center, Chicago, IL, USA;

b
Department of Pscyhology, University of Illinois

at Chicago, Chicago, IL, USA

(Received 23 March 2010; final version received 7 July 2010)

Little is known about ethnic differences in HIV-disclosure to sexual partners or the relationship between HIV-

disclosure and sexual risk. Differences in HIV-disclosure rates between African-American and White men who
have sex with men (MSM) were analyzed using data from the Treatment Advocacy Program. In general, the
findings suggest that African-Americans are less likely than Whites to disclose their HIV status to sexual partners.

The findings also suggest that the African-American participants who disclosed to HIV-negative partners were
significantly less likely to engage in unprotected anal sex with HIV-negative partners and partners whose HIV
status was unknown than those participants who did not disclosure to HIV-negative partners. Although HIV-

disclosure appears to be an important factor to consider in HIV-prevention efforts, there are unique factors that
influence HIV-disclosure decisions for African-American MSM. Interventions should consider these unique
challenges before focusing on HIV-disclosure as a primary tool for reducing the transmission of HIV.

Keywords: HIV/AIDS; HIV prevention; African-Americans; men who have sex with men

Background/Significance

Racial disparities in new HIV infections have become

increasingly pronounced, with African-Americans

accounting for over 50% of all newly diagnosed

HIV/AIDS cases in 2007 (CDC, 2009). Moreover,

African-American men who have sex with men

(MSM) are a highly vulnerable subgroup with

epidemiological data showing they are twice as likely

as White MSM to become infected with HIV (CDC,

2009). In response to these rising infection rates,

prevention efforts have shifted toward more routine

testing and a greater emphasis on prevention inter-

ventions with HIV-positive individuals (CDC, 2009;

Crepaz & Marks, 2003; Gorbach et al., 2004;

Sullivan, 2005). These intervention shifts will inevi-

tably fuel the debate regarding the relationship

between HIV-disclosure and sexual risk. Given the

racial differences in HIV transmission rates, it is

possible that HIV-related behavior, such as HIV

status disclosure, will show similar disparities and

this study seeks to explicitly examine what racial

differences in HIV-disclosure to sexual partners might

exist.
Debate continues regarding the cause of racial

disparities in the rates of HIV infection. Research

shows that African-American MSM are not more

sexually risky and do not have significantly more

sexual partners than their White counterparts (Millett,

Flores, Peterson, & Bakeman, 2007; Millett, Peterson,

Wolitski, & Stall, 2006). Recent data does suggest,

however, that riskier sexual networks may be respon-
sible for higher infection rates for African-American
MSM (Friedman, Cooper, & Osborne, 2009; Kissinger
& Malebranche, 2007). In other words, although
African-American MSM do not appear to engage in
significantly more unprotected sex, the sexual net-
works in which they engage contain more infected
individuals. Therefore, when unprotected sex occurs,
there is a greater likelihood their partner will be HIV-
infected, increasing the probability of HIV exposure
and infection (Friedman et al., 2009; Kissinger &
Malebranche, 2007).

To complicate matters, despite public health
messages that have urged people to treat all casual
or anonymous sexual partners as though they are
potentially infected with HIV, evidence suggests this
does not occur in practice (Klitzman et al., 2007;
Simoni & Pantalone, 2004). In fact, research suggests
that safer sex decisions, such as using a condom, is
influenced by the assessments, or assumptions, an
individual makes about their partners’ HIV status
and the specific risk inherent in the particular
encounter (Golden, Brewer, Kurth, Holmes, &
Handsfield, 2004; Klitzman et al., 2007; Simoni &
Pantalone, 2004). Consequently, a dependence on
condom use as the sole avenue for decreasing HIV-
infection rates runs the risk of creating a culture of
sexual silence that discounts the important role that
both direct and indirect communication, such as HIV-
disclosure, play on sexual risk decisions (Klitzman et al.,
2007).

*Corresponding author. Email: jasonb@howardbrown.org

AIDS Care
Vol. 23, No. 4, April 2011, 444�448

ISSN 0954-0121 print/ISSN 1360-0451 online

# 2011 Taylor & Francis

DOI: 10.1080/09540121.2010.507757

http://www.informaworld.com

http://www.informaworld.com

Although there is little consensus regarding the
connection between HIV-disclosure and sexual risk
(Marks & Crepaz, 2001; Simoni & Pantalone, 2004;
Sullivan, 2005), there is some research that suggests
that HIV-disclosure is associated with decreased
sexual risk with HIV-negative partners or partners
whose HIV status is unknown (Chen, Gibson, Weide,
& McFarland, 2003; Golden et al., 2004; Klitzman
et al., 2007; Simoni & Pantalone, 2004). This may be
particularly true for HIV-negative men, where data
suggest that non-HIV infected MSM are more likely
to use a condom with a partner who is known to be
HIV-positive (Golden et al., 2004). Likewise, many
argue that HIV-disclosure is an important part of
sexual negotiation in that it allows all parties to make
informed decisions about with whom and how a
sexual encounter occurs (Gorbach et al., 2004;
Palmer, 2004). Therefore, HIV-disclosure appears to
be an important factor to consider and may prove an
important avenue through which to alter sexual risk-
taking (Klitzman et al., 2007).

Several possible factors may influence rates of
HIV-disclosure, including time since diagnosis, age,
education, economic status, HIV-related stigma, and
race/ethnicity. Research indicates that time since
diagnosis is related to the rate of disclosure, with
the lowest rates occurring for individuals who have
had their HIV diagnosis for fewer than three years
(Crepaz & Marks, 2003; Klitzman, 1999; Sullivan,
2005). However, as Sullivan (2005) found in a meta-
review of 17 articles regarding HIV-disclosure pub-
lished between 1996 and 2004, age, education, and
economic status are generally unrelated to HIV-
disclosure.

Researchers have also looked at situational fac-
tors to HIV-disclosure such as sexual venue, assumed
partner HIV status, and type of relationship (i.e.,
anonymous, casual, or long-term) (Courtenay-Quirk,
Wolitski, Parsons, & Gomez, 2006; Gorbach et al.,
2004; Klitzman & Bayer, 2003; Klitzman, 1999;
Marks & Crepaz, 2001; Simoni & Pantalone, 2004).
Yet, there has been very little research on the role of
HIV-related stigma on disclosure, which could be a
fundamental barrier to disclosing one’s HIV status
(Bird & Voisin, in press). For example, one might
choose to not disclose to certain types of partners or
in certain sexual settings for fear of the potential
negative repercussions related to HIV-related stigma.
Whereas research has shown that African-American
MSM are less likely to disclose their same-sex sexual
behavior than Whites in general (Millett et al., 2006),
little is known about whether there are ethnic
differences in HIV-disclosure to sexual partners.
Furthermore, there is no research investig-
ating the relationship between disclosure and HIV

transmission risk among African-American MSM.
Therefore, this paper describes ethnic differences in
HIV-disclosure, sexual risk-taking behavior, and the
relationship between HIV-disclosure and sexual risk
in a sample of African-American and White partici-
pants.

Methods

The data analyzed for this paper were derived from
baseline interview data from the Treatment Advocacy
Program, a CDC-funded behavioral intervention for
317, ethnically diverse, HIV-positive MSM, con-
ducted through Howard Brown Health Center, the
University of Illinois at Chicago, the Chicago De-
partment of Public Health, and Saint Joseph Hospi-
tal. For this analysis, HIV-disclosure was defined as
disclosing one’s HIV-positive status to 90% or more
of their sexual partners, which represents a conserva-
tive threshold for identifying patterns of disclosure vs.
non-disclosure. We also used two measures of sexual
behavior, sexual risk, which was defined as any
unprotected anal sex regardless of the partners’ HIV
status, and transmission risk, which was defined as
any unprotected anal sex with an HIV-negative
partner or a partner whose HIV status was unknown.

Data analyses

We conducted two levels of analyses in this paper.
First, we examined the sample characteristics for
differences across ethnicity. Next, we examined rates
of sexual risk, transmission risk, and HIV-disclosure
by ethnicity using a univariate analysis of variance
(ANOVA). We chose to conduct an ANOVA to
control for important factors known or suspected to
relate to disclosure. For all ANOVA analyses, we
entered age, time since diagnosis, income, and educa-
tion as covariates. We also analyzed ethnic differences
in HIV-disclosure to sexual partners on three separate
levels based on their partners’ known or perceived
HIV status, (i.e., HIV-positive, HIV-negative, and
HIV-unknown). Finally, we examined the relation-
ship between HIV-disclosure and transmission risk.

Results

Sample characteristics

African-American MSM represented 32% (N�101)
and White MSM represented 47% (N�150) of the
sample of 317 HIV-positive participants in the
Treatment Advocacy Program (TAP) study. There
were no statistically significant differences between
the African-American and White participants in age

AIDS Care 445

and number of sexual partners; however, the sample
differed on education (earned at least a Bachelor’s
degree: [AA vs. White] 19.8% vs. 44.7%, p B0.001),
income (annual income B$10,000: [AA vs. White]
50% vs. 17.4%, p B0.001), and years since HIV
diagnosis ([AA vs. White] 9.5 vs. 7.6, p B0.05).

Sexual risk/Transmission risk

Controlling for age, income, education, and time
since an HIV diagnosis, we found that African-
American participants were significantly less likely
than White participants to engage in sexual risk F(1,
238) �4.95, p B0.05. However, we found no differ-
ences in HIV-transmission risk by ethnicity; in other
words, the African-American and White participants
engaged in behavior likely to transmit HIV at similar
rates.

Disclosure

We analyzed HIV-disclosure for three levels of sexual
partners’ serostatus: HIV-positive, HIV-negative and
unknown HIV status. For each ANOVA conducted,
we entered age, income, education, and time since
HIV diagnosis, as covariates. On the whole, African-
American participants were significantly less likely to
disclose their HIV status to partners compared to
White participants as demonstrated in Figure 1.
Specifically, African-American participants were less
likely to disclose their status to HIV-positive partners,
F(1, 213)�12.51, pB0.001, HIV-negative partners,
F(1, 209)�14.88, pB0.001, and partners whose HIV
status was unknown, F(1, 212) �5.46, p B0.05.

Disclosure and transmission risk

When we analyzed a subsample of participants, again
controlling for age, income, education and time since
HIV diagnosis, we found that African-American
participants who disclosed to 90% or more of their
HIV-negative sexual partners had significantly less

transmission risk than the White participants who
disclosed to 90% of their HIV-negative partners,
F(1, 107) � 4.87, p B0.05. More importantly, those
African-American participants who disclosed to 90%
or more of their HIV-negative partners reported
significantly less transmission risk than those Afri-
can-American participants who did not disclose at the
90% level, F(1, 89) � 5.57, p B0.05. However, this
pattern was not replicated with 90% disclosure to
those sexual partners whose HIV status was un-
known.

Conclusion/Discussion

Overall, HIV-disclosure and sexual risk-taking
among the African-American and White participants
in this study followed unique patterns. Although the
African-American participants were less likely than
the White participants to report engaging in sexual
risk activities (i.e., unprotected anal sex with a sexual
partner), there were no significant differences between
the two cohorts in HIV-transmission risk behavior
(i.e., unprotected anal sex with a known HIV-
negative partner or a partner whose HIV status was
unknown). In general, African-American participants
were significantly less likely to disclose to their sexual
partners regardless of their partners’ HIV status. Yet,
those African-American participants who did disclose
at the 90% level to their HIV-negative sexual partners
were significantly less likely to engage in transmission
risk than those African-American or White partici-
pants who did not disclose to their HIV-negative
sexual partners at the 90% level. Therefore, disclo-
sure to HIV-negative partners appears to have an
important protective relationship to decreasing trans-
mission risk.

If the hypothesis is that African-American MSM
are engaged in more risky sexual networks (with a
greater probability of encountering an HIV-infected
partner), then the fact that the participants reported
engaging in less overall sexual risk is unlikely to
significantly decrease their exposure to HIV. The fact
that there were no significant differences between the
African-American and White participants in trans-
mission risk behavior suggests that decreasing overall
risk may not be sufficient in decreasing the rate of
HIV infection; to significantly impact the transmis-
sion of HIV, it is essential that transmission risk be
reduced. In this sample, disclosure to HIV-negative
partners appears to be one effective tool in accom-
plishing this important goal. However, the fact that
the African-American participants were significantly
less likely to disclose to their HIV-negative partners
or those partners whose HIV status was unknown

Figure 1. Disclosure to at least 90% of sexual partners by
sero-status.
Note: *p B0.05; **p B0.01.

446 J.D.P. Bird et al.

complicates the usefulness of disclosure as a preven-
tion tool.

Therefore, to effectively leverage HIV-disclosure
in prevention interventions, the challenges must be
fully understood and addressed. Previous predictors
of disclosure did not seem to apply to this subset of
men. For example, the African-American MSM were
more likely to have been diagnosed with HIV for a
longer period of time than the White MSM, a factor
that has generally been associated with increased
HIV-disclosure. This suggests that disclosure patterns
for African-American MSM may be influenced by
unique factors that are different than those identified
in the general literature. One hypothesis is that
African-American MSM experience more HIV-
related stigma than White MSM and that this HIV-
related stigma serves as a primary and fundamental
barrier to disclosure. Goffman (1963) describes stig-
ma as an intensely discrediting attribute, general
knowledge of which can interfere with an individual’s
ability to successfully function within their commu-
nity and society. HIV infection, which is often
interpreted as a reflection of an individual’s poor
moral and deviant character and a signifier of disease
and death, can stimulate intense stigmatization. This
stigmatization extends into the gay community,
where the potential negative consequences of disclo-
sure can result in social isolation and rejection from
friends, community, and sexual networks (Courtenay-
Quirk et al., 2006). If this hypothesis is accurate, then
it illuminates a fundamental obstacle that must be
addressed to understand individuals’ motivations to
disclose or not to disclose their HIV status.

One response to HIV-related stigma may be that
some participants choose to avoid sexual risk instead
of disclosing, thereby avoiding the stigma and nega-
tive social consequences that might be associated with
HIV-disclosure. However, this strategy is not effective
if not practiced consistently. Furthermore, the data
presented here suggest that decreased transmission
risk is not related to non-disclosure; therefore, it does
not appear that using condoms represents an alter-
native strategy to HIV-disclosure.

It is also important to note that, although dis-
closure to HIV-negative partners was associated with
less transmission risk, disclosure to sexual partners
whose HIV status was unknown did not appear to
have any significant impact on transmission risk. The
data available in this study are not sufficient for
explaining why these patterns exist. One possible
hypothesis is that an individual may be willing to
engage in sexual risk with a partner whose HIV status
is unknown once they have disclosed because there is a
sense that they have fulfilled their responsibility and
that their partner is making an informed decision

about engaging in risk. However, the fact that they do
not know their partner’s HIV status suggests that the
communication occurring around HIV is unequal.
This could be problematic if the participant is choos-
ing to use non-direct strategies to disclose (i.e., hinting
about their status or leaving HIV-specific magazines
or medications in plain sight), which could potentially
lead to a misunderstanding or inaccurate understand-
ing about his HIV status. Ultimately, it does not
appear that non-mutual HIV-disclosure was sufficient
for decreasing transmission risk in this sample.

Overall, the data show that in addition to a conti-
nuing need for culturally tailored HIV-prevention
interventions that target sexual risk-taking behavior,
focusing on issues of HIV-disclosure may be an
important avenue for decreasing transmission risk.
However, the data also suggest that interventions
specifically targeting disclosure must take into ac-
count ethnic differences in disclosure patterns, the
unique population-level barriers to disclosure, and
the primary goals for targeting disclosure. For ex-
ample, focusing on disclosure with African-American
MSM may be one avenue for decreasing transmission
risk, at least with known HIV-negative partners.
However, it must also be acknowledged that there
are unique barriers to HIV-disclosure for African-
American MSM that must be explored and under-
stood if there is an expectation that HIV-disclosure
should occur. Focusing on disclosure without regard
to these unique challenges could be counterproduc-
tive, exacerbating the barriers to disclosure rather
than diminishing them.

While these findings highlight important points
for future intervention, there were limitations to this
study. First, the disclosure data are partner-based
rather than incident or episode-based, which could
have resulted in underreporting in non-disclosure.
For example, if an individual did not disclose with
one sexual partner until the third sexual encounter,
this partner may be classified as someone to whom
they disclosed, even though non-disclosure also
occurred. Second, we did not collect demographic
information about the participants’ sexual partners,
such as age or race. Therefore, we are unable to
examine whether partner-level characteristics influ-
enced disclosure decisions such as concordant race.

Finally, data from the Treatment Advocacy
Program cannot fully evaluate the reasons why these
risk and disclosure patterns are different between
African-American and White participants; however,
they highlight the need for greater quantitative and
qualitative research regarding these group differences.
It is important to examine issues of HIV-disclosure
and the relationship between disclosure and risk
through future studies to more clearly define the

AIDS Care 447

particular patterns of sexual risk and HIV-disclosure
for African-American MSM. Additionally, a parti-
cular focus on the role of HIV-related stigma would
increase our understanding of the challenges and
barriers associated with disclosure. This type of
information will be essential to accurately assess the
impact of interpersonal communication in HIV
interventions, safer sex negotiation, and HIV-disclo-
sure among groups at high risk for HIV infection.

Acknowledgements

This study was funded by the Centers for Disease Control
and Prevention of the Department of Health and Human
Services and conducted through Howard Brown Health

Center in collaboration with the University of Illinois �
Chicago, the Chicago Department of Public Health, and
the medical clinic of Slotten, Klein, and French.

References

Bird, J., & Voisin, D. (in press). A conceptual model of
HIV-disclosure in casual sexual encounters among men
who have sex with men. Journal of Health Psychology.

CDC. (2009, August). HIV/AIDS among African Ameri-

cans. Atlanta, GA: U.S. Department of Health and
Human Services, CDC. Retrieved from CDC website:
http://www.cdc.gov/hiv/topics/aa/resources/factsheets/

pdf/aa
Chen, S.Y., Gibson, S., Weide, D., & McFarland, W.

(2003). Unprotected anal intercourse between poten-

tially HIV-serodiscordant men who have sex with men,
San Francisco. Journal of Acquired Immune Deficiency
Syndromes, 33(2), 166�170.

Courtenay-Quirk, C., Wolitski, R.J., Parsons, J.T., &
Gomez, C.A. (2006). Is HIV/AIDS stigma dividing
the gay community? Perceptions of HIV-positive men
who have sex with men. AIDS Education and Preven-

tion, 18(1), 56�67.
Crepaz, N., & Marks, G. (2003). Serostatus disclosure,

sexual communication and safer sex in HIV-positive

men. AIDS Care � Psychological and Socio-Medical
Aspects of AIDS/HIV, 15(3), 379�387.

Friedman, S.R., Cooper, H.L.F., & Osborne, A.H. (2009).

Structural and social contexts of HIV risk among
African Americans. American Journal of Public Health,
99(8), 1352. doi:10.2105/AJPH.2008.140327e

Goffman, E. (1963). Stigma: Notes on the management of
spoiled identity. Englewood Cliffs, NJ: Prentice-Hall.

Golden, M.R., Brewer, D.D., Kurth, A., Holmes, K.K., &
Handsfield, H.H. (2004). Importance of sex partner

HIV status in HIV risk assessment among men who

have sex with men. Journal of Acquired Immune

Deficiency Syndromes, 36(2), 734�742.
Gorbach, P.M., Galea, J.T., Amani, B., Shin, A., Celum,

C., Kerndt, P., Golden, M.R. (2004). Don’t ask, don’t

tell: Patterns of HIV disclosure among HIV positive

men who have sex with men with recent STI practising

high risk behaviour in Los Angeles and Seattle.

Sexually Transmitted Infections, 80(6), 512�517.
doi:10.1136/sti.2004.010918

Kissinger, P., & Malebranche, D. (2007). Partner notifica-

tion: A promising approach to addressing the HIV/

AIDS racial disparity in the United States. American

Journal of Preventive Medicine, 33(2, Suppl. 1),

S86�S87.
Klitzman, R.L. (1999). Self-disclosure of HIV status to

sexual partners: A qualitative study of issues faced by

gay men. Journal of the Gay and Lesbian Medical

Association, 3(2), 39�49.
Klitzman, R., & Bayer, R. (2003). Mortal secrets: Truth and

lies in the age of AIDS. Baltimore, MD: John Hopkins

University Press.
Klitzman, R.L., Exner, T., Correale, J., Kirshenbaum, S.B.,

Remien, R., Ehrhardt, A.A., . . . Charlebois, E. (2007).
It’s not just what you say: Relationships of HIV

dislosure and risk reduction among MSM in the

post-HAART era. AIDS Care � Psychological and
Socio-Medical Aspects of AIDS/HIV, 19(6), 749�756.
doi:10.1080/09540120600983971

Marks, G., & Crepaz, N. (2001). HIV-positive men’s sexual

practices in the context of self-disclosure of HIV status.

Journal of Acquired Immune Deficiency Syndromes,

27(1), 79�85.
Millett, G.A., Flores, S.A., Peterson, J.L., & Bakeman,

R. (2007). Explaining disparities in HIV infection

among black and white men who have sex with men:

A meta-analysis of HIV risk behaviors. AIDS, 21(15),

2083�2091.
Millett, G.A., Peterson, J.L., Wolitski, R.J., & Stall, R.

(2006). Greater risk for HIV infection of black men

who have sex with men: A critical literature review.

American Journal of Public Health, 96(6), 1007�1019.
doi:10.2105/ajph.2005.066720

Palmer, N.B. (2004). ‘‘Let’s talk about sex, baby’’:

Community-based HIV prevention work and the

problem of sex. Archives of Sexual Behavior, 33(3),

271�275.
Simoni, J.M., & Pantalone, D.W. (2004). Secrets and safety

in the age of AIDS: Does HIV disclosure lead to safer

sex? Topics in HIV Medicine, 12(4), 109�118.
Sullivan, K.M. (2005). Male self-disclosure of HIV-positive

serostatus to sex partners: A review of the literature.

Journal of the Association of Nurses in AIDS Care,

16(6), 33�47. doi:10.1016/j.jana.2005.09.005

448 J.D.P. Bird et al.

http://www.cdc.gov/hiv/topics/aa/resources/factsheets/pdf/aa on March 23, 2010

http://www.cdc.gov/hiv/topics/aa/resources/factsheets/pdf/aa on March 23, 2010

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sites or posted to a listserv without the copyright holder’s express written permission. However, users may print,

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Facilitators and Barriers to Discussing HIV Prevention
With Adolescents: Perspectives of HIV-Infected Parents
Laura L. Edwards, PhD, Janet S. Reis, PhD, and Kathleen M. Weber, RN

Parent—child communication about sexual be-
havior has been associated with a range of
protective behaviors in US youths, includ-
ing later onset of sexual activity,1—3 greater
likelihood of using contraceptives,4—7 less
chance of pregnancy,7,8 and a decreased risk of
HIV transmission.9,10 The role of communica-
tion about sexual activity may be particularly
important for children living with an
HIV-infected parent. Some studies report that
adolescents living with an HIV-infected mother
initiate sex at a younger age,11—13 have more
sexual partners,11 report riskier sexual behavior,11—13

and have a higher rate of early childbearing.14

Other studies find that these adolescents have
greater intentions to abstain from sex,13 less
sexual risk behavior,15 and that HIV status may
not contribute any unique risk or benefit to
adolescent HIV risk.16—18 Given this paradoxical
evidence and the lack of a systematic review on
this topic, more information is needed on
parent-child communication in families where 1
or more parents are HIV-infected.

In the broader realm of family interaction,
factors that generally facilitate communication
include parental knowledge, communication
skills, confidence, and comfort discussing sexual
topics,19—23 beliefs that one’s child is ready to
learn about sex,21,24 and perceptions that talking
will have positive consequences for parents and
for youths.23,25 Although previous studies
have queried HIV-infected parents on whether
they discussed safer sex and HIV prevention
with adolescents,13,26—30 the content13,26—30 and
context of such talks,27 their perceived conver-
sational outcomes27,30 and comfort level,27,28

and what role their HIV status played in these
discussions,13,30 no study has focused on factors
that encourage or prevent parents from
broaching these important topics.

We summarized HIV-infected parents’ per-
ceived facilitators and barriers to communicating
with adolescent children about ways to prevent
HIV infection. Because disclosure of HIV sta-
tus,27 child age,21,23 and parent and child

gender21,23 were associated with the frequency
and content of preventive parent—child conver-
sations, we also examined these factors. Parents’
qualitative feedback on facilitators and barriers
was put in the context of 4 quantitative di-
mensions known to be influential in parent-
adolescent communication. Juxtaposition
of these quantitative measures against parents’
personal descriptions of what they find helpful in
talking about HIV prevention with their children
provided a more complete understanding of
family communication,31—33 and therefore, ways
that prevention programs might be tailored to
better support HIV-infected parents.

METHODS

Participants were a convenience sample of
HIV-infected parents living in the Midwest who
self-reported a diagnosis of HIV or AIDS, having
a child aged 10 to 18 years not infected with
HIV, and living with or having frequent visits (an
average of ‡ 4 days/month) with their adolescent

for the past year. One parent from each family
consented and participated in the study; children
were not interviewed. Parents with children as
young as 10 years were included because of less
frequent reports of sexual communication at
early ages.23,34 Because African Americans and
Latinos are disproportionately affected by HIV/
AIDS, race/ethnicity was assessed.35

Recruitment took place from 2009 to 2010
via study fliers placed in participating public
health departments, HIV/AIDS organizations,
and university hospitals or clinics. Eligible
mothers were also recruited from a research
cohort of HIV-infected women by telephone
contact. Of the 116 parents who expressed
interest in participating, 90 met the eligibility
criteria and completed the study. Interviews
took place in private rooms in parents’ homes,
medical clinics, and HIV-related organizations,
and lasted approximately 1.5 hours. During this
time, parents completed a family tree (15 min-
utes), an in-depth interview (1 hour), and
a structured questionnaire (15 minutes). Parents

Objectives. We examined HIV-infected parents’ conversations about HIV

prevention with their uninfected children, including what facilitated or hindered

communication.

Methods. Parents with HIV/AIDS (n = 90) who had children aged 10 to 18 years

were recruited for a mixed method study from 2009 to 2010. Interviews assessed

facilitators and barriers to discussing HIV prevention. A questionnaire identified

the frequency and content of conversations, parental confidence level, and

perceived importance of discussing preventive topics.

Results. Eighty-one percent of parents reported “sometimes” or “often” commu-

nicating about HIV prevention. A subset of parents found these conversations

difficult; 44% indicated their desire for support. Facilitators to communication

included utilizing support, focusing on the benefits of talking, and having a previous

relationship with one’s child. Barriers to discussions included fear of negative

consequences, living in denial, and lacking a parental role model who discussed

safer sex. Parents varied as to how they believed their HIV status affected

communication. Those who did not disclose their HIV status to their children reported

less frequent communication; self-efficacy partially mediated this relationship.

Conclusions. Findings highlighted the need for communication skills training

that support HIV-infected parents in their efforts to discuss HIV-related in-

formation with adolescents. (Am J Public Health. 2013;103:1468–1475. doi:10.

2105/AJPH.2012.301111)

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were told their responses would be confidential
and received $30 compensation for their time.

Interview and Questionnaire Data

Interview data examined parents’ underlying
rationale for talking about HIV prevention,
what facilitated or hindered communication,
and what impact (if any) they felt their HIV
status had on HIV-related talks. A life span
interview approach was used, with parents
reporting on their cumulative experiences dis-
cussing HIV-related topics with each of their
adolescents.36,37 Interviews were audio-
recorded, transcribed, and analyzed using
qualitative data analysis software (NVivo).38

The questionnaire included demographic
characteristic information, an item assessing
whether parents had disclosed their HIV status to
“none,” “some,” or “all” of their children,39 and 3
scales measuring the overall frequency, content,
self-efficacy, and perceived importance of parent—
adolescent communication about HIV-related
topics. Scales were adapted from measures of
sexual communication in the broader parent—
adolescent population because of a lack of vali-
dated scales for HIV-infected parents.13 Final
measures were reviewed by HIV content pro-
fessionals and experts in behavioral research and
instrument design; they were then pilot tested on
5 HIV-positive parents. A description of each scale
is provided in the following (see Edwards40 for
detailed study methodology and measures).
Frequency and content. These dimensions

were assessed using a modified version of the
Parent—Adolescent Communication Scale.41 The
original scale (Cronbach a = 0.88—0.90) in-
cluded 5 items on how often parents and
adolescents talked about sex, condoms, sexually
transmitted diseases, HIV/AIDS, and pregnancy
in the past 6 months. Response options ranged
from 1 (“never”) to 4 (“often”). Four items were
added to assess communication about drug use,
sexually transmitted disease testing, HIV testing,
and parental HIV/AIDS status. The modified
(9 item) version of the scale had high internal
reliability in this sample (a = 0.94). These items
also formed the basis for the self-efficacy and
perceived importance scales.
Self-efficacy. This scale assessed how confi-

dent parents were discussing the 9 content
items with their adolescent(s). Wording and
response options were created to be congruent
with previous measures of parental self-efficacy

about sexual communication.42 Item responses
ranged from 1 (“not sure at all”) to 4 (“com-
pletely sure”) that parents could talk about the
various topics (a = 0.91).
Perceived importance. The perceived impor-

tance scale assessed how much parents wanted
their adolescents to know about the 9 content
items (a = 0.92). Item responses ranged from 1
(“not at all important”) to 4 (“very important”).

Qualitative and Quantitative Analyses

Initial coding proceeded using a grounded
theory approach, a systematic method for iden-
tifying recurring themes.43 Approximately 25%
of the transcripts were coded by 4 coders to
generate a comprehensive list of barriers and
facilitators identified by parents; these codes
were then grouped into larger themes. Code-
books were created for each theme, including
the code definition, when to use versus not to
use the code, and example quotes.44 One coder
returned to the transcripts and analyzed all 90
according to the codebook definitions. Interrater
reliability checks were performed by a faculty
expert on a random 10% of examples in each
code. Frequencies for themes were tabulated,
and Cohen’s j45 was calculated at 90% or
greater for all themes.

Data were compared by race/ethnicity, par-
ent and child gender, child age, time since
parent’s HIV diagnosis, and HIV disclosure.
The impact of having both HIV-positive and
HIV-negative children on parent’s communica-
tion about HIV was also analyzed. The Pearson
v2 test or the Fisher exact test was used to
compare categorical variables on disclosure
to children. The independent t-test was used to
compare dichotomous variables (including pa-
rental facilitators, barriers, and being HIV
positive) on HIV-related communication scales.
The Kruskal—Wallis test was used to examine
associations between child gender, child age,
self-efficacy, and importance; an analysis of
variance was used to examine associations
between disclosure and frequency. Mediation
analysis was conducted to determine the re-
lationship between disclosure, self-efficacy, and
frequency of communication.46

RESULTS

Parents’ mean (SD) age was 45.5 (7.6)
years. More than 90% had been living with

HIV/AIDS for at least 5 years, with an average
time since diagnosis of 12.6 (5.5) years. Most
were mothers (69%), African American
(77%), and had a high school education or less
(90%). Collectively, these parents cared for
317 children, with a mean of 3.6 children per
family (range = 1—9). Of the 317 children,
155 were HIV-negative adolescents aged 10
to 18 years.

Most parents (80%) lived with their ado-
lescent(s). There were slightly more female
adolescents (54%) than male adolescents,
with a mean age of 14.6 (2.5) years. Almost
8% of parents also had an HIV-positive child
(6% infected by childbirth and 2% by the
child’s own sexual risk behavior). Demo-
graphic characteristic information is shown
in Table 1.

HIV Prevention Communication

Parents reported moderate to high levels of
communication with adolescents about HIV-
related topics (mean 27.2 [7.9], range = 9—36).
Most reported that they sometimes or often
talked about sex (86%), drugs (78%), condoms
(67%), and protection from sexually transmit-
ted diseases (82%), AIDS (81%), and preg-
nancy (77%). Similarly, many parents (‡ 80%)
felt confident they could discuss these various
topics with their adolescent(s).

Parents also reported high levels of per-
ceived importance of HIV prevention commu-
nication (mean 34.9 [3.1], range = 12—36).
The majority (‡ 90%) reported that it was very
important to them that their adolescent(s) know
about prevention-related content. Table 1
presents communication variables stratified by
parent and child demographic characteristics.
Of special note, no parent or child gender
differences were found in terms of frequency,
self-efficacy, or perceived importance of talking
about HIV prevention. Significant differences
were found for HIV disclosure status (parents
with older adolescents [aged 14—18 years;
v2 = 6.40; df = 2; P = .041] or those who also
had an HIV-positive child [v2 = 4.39; df = 1;
P = .036] were more likely to disclose to all of
their children), for frequency (parents with older
adolescents were more likely to report frequent
communicatio: [F(2,87) = 3.57; P = .032]), and
for self-efficacy (parents who had been HIV-
positive < 6 years reported greater confidence discussing HIV-related topics [t17 = 3.40; P = .003]).

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Facilitators of Communication

The 3 most frequent facilitators of HIV-
related conversations included (1) utilizing
support, (2) focusing on the benefits of com-
munication, and (3) having a previous rela-
tionship with one’s child. Example quotes are
shown in Table 2.
Utilizing support. Parents relied heavily on

social and informational support to help make
communicative interactions more manageable.
Social support was provided by family mem-
bers, friends, health care providers, therapists,
and church personnel. Levels of support
ranged from completely relying on others (to
communicate for them) to merely having an-
other person present during conversation. HIV
support groups led to several opportunities to
discuss HIV and prevention in a supportive
environment. Parents were also assisted by
various types of informational resources,

including books, pamphlets, brochures, televi-
sion, radio, and the Internet.
Focusing on the benefits of talking. Many

parents believed it was easier for them to talk
about HIV if they focused on the potential
benefits of open communication. Benefits es-
pecially salient in this sample were (1) the
desire to protect one’s child (from harm or from
misinformation), and (2) fulfilling one’s paren-
tal duty (by having conversations that fostered
adolescent well-being). Parents expressed
a deep desire to protect their children from
HIV infection, along with the hope that cir-
cumstances would be “different” for their
children than it had been for them.
Having a previous relationship with one’s child.

Parents felt it was easier to establish supportive
relationships with adolescents in general before
moving on to sensitive topics. Once broad com-
munication patterns were established, specific

conversations about sex, drug use, and HIV
became less difficult. This focus on establishing
close relationships was especially salient for
parent-child relationships that were disrupted by
absence or substance abuse.

Barriers to Communication

The 3 most frequently reported barriers to
conversation were (1) fear and focusing on
disadvantages, (2) living in denial, and (3)
lacking a communicative role model. Example
quotes for these themes are shown in Table 3.
Fear and focusing on disadvantages. Parents

expressed fears of the unknown situations or
topics that might arise if they talked about HIV
with their children. Three fears were especially
prominent: (1) concern for the welfare of
their child, (2) fear of damaged self-image, and
(3) fear of awkward conversations. These
parents feared that information shared during

TABLE 1—HIV-Related Communication Scales by Sample Characteristics: Midwest United States, 2009–2010

Disclosure to Children HIV-Related Communicationa

Characteristic

Full Sample,

No. (%)

None/Some,

No. (%)

All,

No. (%)

Frequency,

No. (Mean)

Self-Efficacy, No.

(Mean or Median
b
)

Importance, No.

(Mean or Median
b
)

Race/ethnicity

African American 69 (76.7) 25 (75.8) 44 (77.2) 69 (27.3) 69 (31.4) 68 (34.9)

Other 21 (23.3) 8 (24.2) 13 (22.8) 21 (27.0) 21 (31.6) 21 (34.8)

Gender of parent

Female 62 (68.9) 22 (66.7) 40 (70.2) 62 (27.2) 62 (31.2) 61 (35.0)

Male 28 (31.1) 11 (33.3) 17 (29.8) 28 (27.3) 28 (31.8) 28 (34.6)

Gender of children

Female only 38 (42.2) 15 (45.5) 23 (40.4) 38 (27.3) 38 (33.5) 38 (36.0)

Male only 26 (28.9) 9 (27.3) 17 (29.8) 26 (26.5) 26 (33.5) 25 (36.0)

Mixed 26 (28.9) 9 (27.3) 17 (29.8) 26 (27.9) 26 (34.0) 26 (36.0)

Age of children
c

Younger (10–13 y) 22 (24.4) 11 (33.3)* 11 (19.3)* 22 (23.5)** 22 (31.5) 21 (36.0)

Mixed (10–18 y) 25 (27.8) 12 (36.4)* 13 (22.8)* 25 (27.9)* 25 (33.0) 25 (36.0)

Older (14–18 y) 43 (47.8) 10 (30.3)* 33 (57.9)* 43 (28.7)** 43 (34.0) 43 (36.0)

Also has HIV-positive child

Yes 7 (7.8) 0 (0)* 7 (12.3)* 7 (28.0) 7 (34.4) 7 (34.6)

No 83 (92.2) 33 (100)* 50 (87.7)* 82 (27.2) 83 (31.1) 82 (34.9)

Years living with HIV

0–5 8 (8.9) 5 (15.2) 3 (5.3) 8 (31.6) 8 (34.8)** 8 (35.8)

‡ 6 82 (91.1) 28 (84.8) 54 (94.7) 82 (26.8) 82 (31.1)** 81 (34.8)

a
Possible scores on each scale ranged from 9 to 36.
bMean values for all characteristics except child gender and child age (median values are reported for these).
cAnalysis of variance post hoc least-signficance difference tests showed significant differences in frequency between parents with younger vs mixed age children (P = .05) and between parents with
younger vs older children (P = .01). Parents with mixed aged vs older children did not differ significantly on frequency scores.
*P £.05; **P £.01.

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prevention conversations, including disclosing
their HIV status, might worry their children or
place an unnecessary burden on them. Parents
also explained the tension between wanting
to use their personal experiences (e.g., pre-
vious risky sex or drug use) as a learning tool
for adolescents, yet worrying that revealing
such information could portray them in an
unfavorable light. Conversations about par-
ents’ past experiences brought up isolated
instances of HIV risk behavior and also
brought up deeper family issues like sexual
abuse, extramarital affairs, and sexual orien-
tation. Parents were not sure they knew how
to best explain these complicated and often
uncomfortable topics.
Living in denial. A number of parents viewed

denial as a barrier to having productive HIV-
related conversations with adolescents. Living
in denial was defined as a parent’s inability or

difficulty accepting reality, usually in terms of
their HIV status or related risk behaviors.
Parents emphasized that it was important to
have time to cope with their diagnosis before
sharing information about prevention with
their families.
Lacking parental role model. Most parents

(78%) were unable to recall a parent or
guardian who talked to them about sex or
prevention of sexually transmitted infec-
tions. More than 20% of parents reported
that lacking a role model who talked about
sex contributed to their own difficulty
conversing with adolescents about sexual
activity. Although parents generally felt the
current generation was more open about
topics like safe sex and HIV/AIDS, it was
difficult to let go of the contexts they were
raised in and embrace a more open ap-
proach to conversation.

Role of Parental HIV Status

and Disclosure

Being HIV-positive. Approximately one
third of parents spontaneously brought up
their HIV status as either a facilitator (27%)
or barrier (7%) to HIV-related talk. When
specifically asked how their HIV status af-
fected parent—adolescent communication
about HIV prevention later in the interview,
59% of parents reported their status made
HIV-related conversations easier, 28% be-
lieved their HIV status did not affect these
discussions, and 13% thought it made them
harder.

Parents who viewed their HIV status as
a facilitator believed being HIV-positive
helped conversations because (1) they were
more aware of the risks of contracting HIV,
(2) they had better quality knowledge to
share with their children (as a result of living

TABLE 2—Themes and Example Quotes for Facilitators of Communication: Midwest United States, 2009–2010

Facilitator

Informant

or Parent Example Quotation

Utilizing support

Supportive others (family, friends,

health care providers)

Mother It comes much easier when I’m with my sister, because when I was coming up, she was always there for me, and she told

me a lot. When I’m with her and we talk to my kids, it just comes out—I’m comfortable. I don’t sugar-coat nothing.

I just tell them. . . . I’ve always had my family’s (support).

Supportive resources (media,

educational materials)

Mother One day we were in the car. We were coming from church, and we were listening to the radio, and there was something

on about it (HIV), so I just went on and told ‘em. . . . My son asked “How do you get HIV?” I said, “Through sharing

needles with drug users and through sex.” And I just told him that I was HIV positive. It was already on the subject,

so I just told him.

Focusing on benefits of communication

Protecting child Mother I don’t find it hard (to talk) because when I look at it like “well I might have to be the person to save this person’s

life,” in one way or another it makes it a whole lot easier.

Fulfilling parental duty Father To impart a lot of the knowledge that I have on my child, I feel that is my duty.

Having previous relationship with child Father At that age (early adolescence), they got to be well-disciplined. Parents in their life. . . whatever they are doing, the

parents do it with them. That makes a difference. . . those kids’ have a better chance of not getting this virus.

Because they’re gonna tell them about it. They’re gonna take them places. They’re gonna do things with them.

Being HIV-positive

Heightened risk awareness Mother I don’t know if I would have talked to them about the disease if I had not been positive. But becoming positive made

me be conscious of the danger of it, because even though we all know about the disease, knowing about it is different

than living with it. So that made me be more cautious. . . . I would talk to them because I became very aware.

Better knowledge Mother If the person is living with the HIV disease, I think that they have more knowledge. . . . They’re coping with it so they

know how it feels to live everyday with the disease. And I feel that they can share their experience, what they know

about it. You know, symptoms, the different things that you go through. So I think it does create room (to talk).

Visibility of illness Mother (It’s easier to talk) because they’ve seen it first-hand. . . They’ve seen Timmy (their stepdad who passed away from

AIDS complications recently) being (sick). . . . It was all there for them to see. They could see the different mood

swings. . . all these doctor visits. (They’d ask) “Why do you have to get all that blood drawn?” You know, they saw

me go through that. So yeah, it made it easier to talk about.

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with HIV infection themselves), and (3) HIV
was more visible in their everyday lives and
thus more likely to emerge as a topic of
conversation.

Parents who viewed their HIV status as
a barrier felt HIV-related conversations were
more complicated because (1) they felt com-
pelled to explain HIV in more detail, (2)
conversations could end up focusing on their
own status, and (3) they believed their children
might not understand the information, already
had negative attitudes about HIV, or would
react negatively to HIV-related discussions.
Example quotes from parents who reported
their HIV status as a facilitator versus a barrier

are shown in Tables 2 and 3, respectively.
Parents who believed their HIV status made
preventive talks easier reported more frequent
HIV-related conversations and higher self-
efficacy (Table 4).
HIV disclosure. Over half (63%) of parents

reported disclosing their HIV status to all of
their children, 20% to some, and 17%
reported that none of their children knew.
Parents who did not disclose their HIV status to
all of their children reported less frequent
communication about HIV prevention with
adolescents (F(2,87) = 5.73; P = .005); self-
efficacy only partially mediated this relation-
ship. Parental disclosure was not related to the

content discussed or to parents’ perceived
importance of talking about HIV prevention.

Finally, few differences emerged between
disclosure status and parents’ reported facilita-
tors and barriers to preventive conversations.
Parents who did not disclose their HIV status to
all of their children were more likely to report
lacking a parental role model who communi-
cated about sexual topics (v2 = 4.67; df = 1;
P = .031) and to view their HIV status as either
not affecting HIV prevention conversations or
making conversations more difficult (v2 =
14.06; df = 1; P = .001; Table 4). Parents who
reported focusing on the benefits of talking
reported higher self-efficacy (t88 = 2.23;

TABLE 3—Themes and Example Quotes for Barriers to Communication: Midwest United States, 2009–2010

Barriers

Informant
or Parent Example Quotation

Fear and focusing on disadvantages

Concern for welfare of child Well my fear is that I don’t want to worry them. . . . kids are good like that. . .I don’t care how horrible of a parent you are,

they still have this inability to just forgive and love. . . . So it’s hard for me to deal with just scaring the mess out them.

And I know this is an issue that people who are educated in HIV and AIDs still fear. . . . To put that (HIV) on your kids with

all the extra things that they go through: peer pressure, things like that. It’s just unbearable to think of. It’s just one added

thing for them to go through. And I wouldn’t wish that on any kid.

Fear of damaged self-image Father I think (it’s hard) because they (parents) are not open with their children. The reason I say that is because some parents may

think their kid may shun them. So they don’t want to be ostracized by their kid.

Awkward conversations Father I guess it’s (hard because) it’s just uncomfortable dealing with the issue of sex with your own children. At least that’s the

biggest part for me. . . . I think it’s just uncomfortable for a lot of parents to talk to their kids about sex—they don’t want

to talk to them.

Living in denial Mother Well first of all the parents have to be comfortable with themselves. They need to not be in denial. . . . Because, see, in the

beginning I wasn’t like that. I couldn’t stand the fact that the illness was running through my veins and I hated it. I was

ashamed of it—I thought it was dirty. I thought people were gonna reject me. But once I learned about the illness and

once I was going to support groups and taking care of myself I didn’t care what people thought. I just knew I needed to

take care of myself. I think you have to get there before you can go any further.

Lacking parental role model Mother Well to tell you the truth, the way I was raised and the way I raised my kids, you were told “this is bad, this is good, this you

don’t do.” So there’s never any reason to have to talk about it because I’ve explained to you “this is a no-no.” If (only)

my parents had been able to talk with me and express with me about it before. . . because the questions that baby asks me,

we would get popped in the mouth for. And it’s really hard to communicate when you got everything set up as “this is bad.”

Father We don’t talk about. . .sexuality or drugs until the blister bursts and we’re ready to discuss everything about it–or go into denial.

I think maybe parents just want to give you a book to read, or let society teach you. It’s not a societal issue though. . . . In

my own home we didn’t discuss a lot of things, especially sexuality and my being bisexual. . . . It was like “We’re just going

to ignore that.”

Being HIV-positive Mother It’s harder (because) you’ve got to explain it in more detail. . . . I had a lot of rebellious kids when I did say something about it.

We just went through so much with it, because there was a lot of rebellion and (a lot of) “You’re dying anyway and nobody is

going to be with us” when conversations about HIV came up. Then eventually, after we went through all of the storms, we were

closer. We’re real close now.

Mother It’s harder because I just don’t want them to know, period. . . . I just don’t want them know that I’m HIV positive.

Father I just tell them “be careful.” It’s hard because I don’t use myself as an example (I don’t tell them that I have HIV).

Mother (It’s harder) because they have a negative attitude toward HIV+ people. . . the kids do. . . they have made little (HIV-related) cracks.

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P = .028) and perceived the importance of
HIV-related talks (t56 = 2.85; P = .006).

DISCUSSION

This study provided new information about
what helped and prevented HIV-infected par-
ents’ from engaging in preventive conversa-
tions with youths. Our findings added to
previous estimates that 48% to 95% of
HIV-infected parents discussed preventive
topics with their uninfected children27,30 and
provided the first descriptions of such discus-
sions in the central United States. In addition,
we offered insight on the role of fathers and
examined how HIV disclosure might affect
parent-child talks.

In response to the quantitative scales, par-
ents reported communicating frequently about
prevention, believed parent-child discussions
were vital to adolescent health, and were
generally confident they could talk to their
children about prevention-related content.
During the qualitative interviews, however,
a more nuanced picture of family communica-
tion emerged. Even parents who reported
frequent talks in the past 6 months by ques-
tionnaire described factors that hindered their
communicative efforts across various times.

These data were consistent with previous
studies indicating that at least a subset of
HIV-infected parents found preventive con-
versations difficult; such parents expressed
fears that their children would react negatively
to conversations and might be less likely to
initiate discussions if they had younger ado-
lescents (10—13 years old) or had not disclosed
their HIV status to their children.27,30 In
addition, parents in our sample reported com-
munication challenges that arose from personal
difficulties accepting their HIV status and
from lacking a parent who talked to them about
sexual health. These barriers have not yet been
reported in the literature on HIV-infected
parents.

No data currently exist on the extent to
which HIV-infected parents desire or rely upon
support when discussing preventive topics with
their families, although 44% of the parents in
our sample emphasized the importance of
social, informational, and professional support
in making HIV-related conversations more
manageable. In line with previous research,
our findings indicated that parents would be
appreciative of programs that are sensitive to
how living with HIV/AIDS might affect family
communication dynamics.30 Most parents in
our study believed their HIV status had

a positive impact on HIV-related discussions
with their children. Those who believed their
HIV status facilitated conversations reported
more frequent discussions and greater confi-
dence discussing sexual health. A program-
matic focus on fostering a positive parental
self-image and highlighting how living with
HIV might provide constructive opportunities
to educate family members about sexual
safety (e.g., more opportunities to discuss
prevention, the ability to share first-hand
knowledge) is recommended.

The role of parental HIV disclosure was
examined in 1 previous study, which also
found that mothers of children who knew
their HIV status were more likely to report
frequent talks about HIV.27 Our study ex-
tended this finding by indicating that parents
who did not disclose their status to all of
their children might have lower confidence
in their ability to talk or less opportunity to
talk about prevention in a family context.
Because most of the preventive conversa-
tions take place at home with siblings pres-
ent,27 guidance from practitioners might be
needed to help parents employ alternative,
effective strategies for communicating with
children of different ages, different levels of
knowledge about HIV infection, and

TABLE 4—Parental Facilitators and Barriers by HIV-Related Communication Measures: Midwest United States, 2009–2010

Disclosure to Children HIV-Related Communicationa

Full Sample

(n = 90), No. (%)

None/Some

(n = 33), No. (%)

All (n = 57),

No. (%)

Frequency (n = 90),

No. (Mean)

Self-Efficacy (n = 90),

No. (Mean)

Importance (n = 90),

No. (Mean)

Facilitators

Utilizing support 40 (44.4) 16 (48.5) 24 (42.1) 39 (28.4) 39 (31.9) 39 (35.5)

Focusing on benefits of talk 37 (41.1) 12 (36.4) 25 (43.9) 36 (28.5) 36 (33.0)*
b

36 (35.8)**
c

Previous relationship with child 20 (22.2) 10 (30.3) 10 (17.5) 19 (28.0) 19 (32.8) 19 (34.8)

Barriers

Fear/focus on disadvantages 27 (30.0) 12 (36.4) 15 (26.3) 26 (26.8) 26 (31.8) 26 (35.1)

Living in denial 20 (22.2) 6 (18.2) 14 (24.6) 19 (27.8) 19 (33.1) 18 (35.7)

Lack parental role model 19 (21.1) 11 (33.3)* 8 (14.0)* 18 (26.2) 18 (31.7) 18 (35.4)

Being HIV-positive

Makes talk easier 53 (58.8) 11 (33.3)** 42 (73.7)** 53 (28.9)* 53 (32.4)* 53 (34.9)

Makes talk harder/does not affect 37 (41.1) 22 (66.7)** 15 (26.3)** 37 (24.9)* 37 (30.0)* 36 (34.9)

Note. Facilitators and barriers are not exhaustive categories; being HIV-positive categories are exhaustive.
aPossible scores on each scale ranged from 9 to 36.
bMean score = 30.3 for parents who did not report this facilitator.
c
Mean score = 34.3 for parents who did not report this facilitator.
*P £.05; **P £.01.

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August 2013, Vol 103, No. 8 | American Journal of Public Health Edwards et al. | Peer Reviewed | Research and Practice | 1473

different stages of awareness of their par-
ent’s HIV status.47

Although mothers are often regarded as
the primary source of sexual health informa-
tion for adolescents,48 we found no differ-
ences in communication by parent or child
gender. This child gender finding was similar
to 2 previous studies.27,29 The only other
study to include HIV-infected fathers also
indicated fathers were active in providing
preventive information.28 It might be that the
salience of HIV in HIV-infected fathers’ lives
overcomes more traditional barriers that
might prevent fathers from discussing sexual
topics with their children. These preliminary
findings indicated a need for further research
on fathers and future programs that both
encourage fathers to communicate and pro-
vide them with guidance on how to do so
effectively.

Limitations

Although our findings offered a deeper un-
derstanding of HIV-related communication
between HIV-positive parents and their chil-
dren, they must be taken in context. The
viewpoints of a convenience sample of pre-
dominantly African American parents who
were living with HIV infection for a number of
years might be unique within the overall
population of HIV-infected parents. Future
studies with larger samples are needed for
more complex quantitative investigations;
however, our data indicated that parental HIV
disclosure, child age, having an HIV-positive
child, length of time since HIV diagnosis, and
parental beliefs about the role of their HIV
status in preventive conversations merit further
study. Because this research relied on parental
self-report, future work should also investigate
adolescent or dyadic reports of HIV-related
conversations, including how communication
might vary by child in families with multiple
adolescents. Finally, we did not assess other
protective parenting practices like parental
monitoring or supervision, parenting style, or
overall quality of the parent-adolescent rela-
tionship, which are known predictors of ado-
lescent risk-taking behavior.20,49,50

Conclusions

Looking toward implications for the future,
our data suggested that existing HIV

prevention programs could be effectively tai-
lored to meet the needs of parents living with
HIV/AIDS, and that current HIV care pro-
grams could benefit by increasing their focus
on prevention communication within families.
Some of the facilitators cited by parents in this
study were already components of existing
HIV prevention interventions20,51 and had
a strong theoretical basis in the health be-
havior, family studies, and communication
literature.25,52,53 Despite the substantial day-
to-day challenges HIV-positive parents face,
most reported they would be open to receiv-
ing preventive communication training and
would welcome attention from HIV care pro-
fessionals with regards to their parenting
concerns. Given the recent success of HIV
disclosure programs in increasing parental
disclosure to adolescents,54 programs that also
seek to either begin or maintain this commu-
nication in the form of preventive conversa-
tions with youths hold promise for future
investigation. j

About the Authors
Laura L. Edwards is with the Department of Kinesiology
and Community Health and the College of Medicine,
University of Illinois at Urbana-Champaign. Janet S. Reis is
with the Department of Human and Community Develop-
ment and the Department of Family Medicine, University of
Illinois at Urbana-Champaign. Kathleen M. Weber is with
the CORE Center, Cook County Health and Hospital
Systems, and the Hektoen Institute of Medicine, Chicago, IL.
Correspondence should be sent to Laura L. Edwards,

PhD, University of Illinois at Urbana-Champaign, De-
partment of Kinesiology and Community Health, Huff Hall,
1206 S. Fourth Street, Champaign, IL 61820 (e-mail:
lhickm2@illinois.edu). Reprints can be ordered at
http://www.ajph.org by clicking the “Reprints” link.
This article was accepted October 15, 2012.

Contributors
L. L. Edwards and J. S. Reis were involved in study
design, data collection and analysis, and writing of the
article. K. M. Weber contributed to the study design, data
collection, and writing of the article.

Acknowledgments
This study was supported by the National Institute of
Mental Health (grant F30MH086364), the Sherri Aversa
Memorial Foundation, Arnold P. Gold Foundation, and
the University of Illinois Graduate College, Department of
Communication, and College of Medicine. Some of the
data in this article were collected by the Chicago site of
the Women’s Interagency HIV study, which is funded by
the National Institute of Allergy and Infectious Diseases
(NIAID; grant U01-AI-34994; principal investigator,
Mardge Cohen) and co-funded by the National Cancer
Institute and National Institute of Drug Abuse. K. M. Weber
is also funded in part by NIAID (grant P30-AI082151).

We would like to thank the families and HIV organi-
zations that helped with recruitment and the students of
CHLH 393 and SPCM 492 who assisted with data
transcription. We also extend our deepest gratitude to
Dale Brashers (1959—2010) for his various contributions
to this project.

Note. The contents of this publication are solely the
responsibility of the authors and do not necessarily
represent the views of the National Institutes of Health.

Human Participant Protection
This study was reviewed and approved by the University
of Illinois at Urbana-Champaign, Carle Foundation Hos-
pital, and the Cook County Health and Hospital System
institutional review boards.

References
1. Furstenberg FF, Moore KA, Peterson JL. Sex edu-
cation and sexual experience among adolescents. Am J
Public Health. 1985;75(11):1331—1332.

2. Leland NL, Barth RP. Characteristics of adolescents
who have attempted to avoid HIV and who have
communicated with parents about sex. J Adolesc Res.
1993;8(1):58—76.

3. Lehr ST, DiIorio C, Dudly WN, Lipana JA. The
relationship between parent-adolescent communication
and safer sex behaviors in college students. J Fam Nurs.
2000;6(2):180—196.

4. Fox JL. The family’s role in adolescent sexual
behavior. In: Ooms T, ed. Teenage Pregnancy in a Family
Context. Philadelphia, PA: Temple University Press;
1981:73—130.

5. Fisher TD. Family communication and the sexual
behavior and attitudes of college students. J Youth
Adolesc. 1987;16(5):481—495.

6. Pick S, Palos PA. Impact of the family on the sex lives
of adolescents. Adolescence. 1995;30(119):667—675.

7. Hadley W, Brown LK, Lescano CM, Kell H,
Diclemente R, Donenberg G; Project STYLE Study
Group. Parent-adolescent sexual communication: associ-
ations of condom use with condom discussions. AIDS
Behav. 2009;13(5):997—1004.

8. Baumeister LM, Flores E, Marín BV. Sex information
given to Latina adolescents by parents. Health Educ Res.
1995;10(2):233—239.

9. Leland NL, Barth RP. Characteristics of adolescents
who have attempted to avoid HIV and who have
communicated with parents about sex. J Adolesc Res.
1993;8(1):58—76.

10. Perrino T, González-Soldevilla A, Pantin H,
Szapocznik J. The role of families in adolescent HIV
prevention: a review. Clin Child Fam Psychol Rev.
2000;3(2):81—96.

11. Chabon B, Futterman D, Hoffman ND. HIV in-
fection in parents of youth with behaviorally acquired
HIV. Am J Public Health. 2001;91(4):649—650.

12. Lee MB, Lester P, Rotheram-Borus MJ. The re-
lationship between adjustment of mothers with HIV and
their adolescent daughters. Clin Child Psychol Psychiatry.
2002;7(1):71—84.

13. Cederbaum JA. The Influence of Maternal HIV
Serostatus on Mother-Daughter Sexual Risk Communi-
cation and Adolescent Engagement in HIV Risk Behav-
iors [dissertation]. Philadelphia, PA: University of
Pennsylvania; 2009.

RESEARCH AND PRACTICE

1474 | Research and Practice | Peer Reviewed | Edwards et al. American Journal of Public Health | August 2013, Vol 103, No. 8

mailto:lhickm2@illinois.edu

14. May S, Lester P, Ilardi BA, Rotheram-Borus MJ.
Childbearing among daughters of parents with HIV.
Am J Health Behav. 2006;30(1):72—84.

15. Murphy DA, Herbeck DM, Marelich WD, Shuster
MA. Predictors of sexual behavior among early and
middle adolescents affected by maternal HIV. Int J Sex
Health. 2010;22(3):195—204.

16. Leonard NR, Gwads MV, Cleland CM, Vekaria PC,
Ferns B. Maternal substance use and HIV status: adoles-
cent risk and resilience. J Adolesc. 2008;31(3):389—405.

17. Mellins CA, Brackis-Cott E, Dolezal C, Meyer-
Bahlburg HF. Behavioral risk in early adolescents with
HIV+ mothers. J Adolesc Health. 2005;36(4):342—351.

18. Mellins CA, Dolezal C, Brackis-Cott E, Nicholson O,
Warne P, Meyer-Bahlburg HF. Predicting the onset of
sexual and drug risk behaviors in HIV-negative youths
with HIV-positive mothers: the role of contextual, self-
regulation, and social-interaction factors. J Youth Adolesc.
2006;36(3):265—278.

19. Miller KS, Fasula AM, Dittus P, Wiegand RE,
Wyckoff SC, McNair L. Barriers and facilitators to
maternal communication with preadolescents about
age-relevant sexual topics. AIDS Behav. 2009;13
(2):365—374.

20. Dittus P, Miller KS, Kotchick BA, Forehand R. Why
parents matter!: the conceptual basis for a community-based
HIV prevention program for the parents of African Amer-
ican youth. J Child Fam Stud. 2004;13(1):5—20.

21. DiIorio C, Pluhar E, Belcher L. Parent-child com-
munication about sexuality: a review of the literature
from 1980-2002. J HIV AIDS Prev Educ Adolesc Child.
2003;5(3-4):7—32.

22. Bastien S, Kajula LJ, Muhwezi WW. A review of
studies of parent-child communication about sexuality
and HIV/AIDS in sub-Saharan Africa. Reprod Health.
2011;8(1):25.

23. DiIorio C, McCarty F, Pluhar E. Talking about HIV
and AIDS: a focus on parent-child discussions. In: Edgar
T, Freimuth VS, Noar SM, eds. Communication Perspec-
tives on HIV/AIDS for the 21st Century. 1st ed. New York,
NY: Lawrence Earlbaum Associates; 2008:169—192.

24. Miller KS, Lin CY, Poulsen MN, et al. Enhancing HIV
communication between parents and children: efficacy of
the Parents Matter! program. AIDS Educ Prev. 2011;23
(6):550—563.

25. Guilamo-Ramos V, Jaccard J, Casillas E. Parent-
adolescent communication about sexual intercourse: an
analysis of maternal reluctance to communicate. Health
Psychol. 2008;27(6):760—769.

26. Brackis-Cott E, Mellins CA, Block M. Current life
concerns of early adolescents and their mothers: influence
of maternal HIV. J Early Adolesc. 2003;23(1):51—77.

27. O’Sullivan LF, Dolezal C, Brackis-Cott E, Traeger L,
Mellins CA. Communication about HIV and risk behav-
iors among mothers living with HIV and their early
adolescent children. J Early Adolesc. 2005;25(2):148—
167.

28. Corona R, Cowgill BO, Bogart LM, et al. Brief
report: a qualitative analysis of discussions about HIV in
families of parents with HIV. J Pediatr Psychol. 2009;34
(6):677—680.

29. Marhefka SL, Mellins CA, Brackis-Cott E, Dolezal C,
Ehrhardt AA. Perceptions of adolescents’ sexual be-
havior among mothers living with and without HIV:

does dyadic sex communication matter? Arch Sex Behav.
2009;38(5):788—801.

30. Murphy DA, Roberts KJ, Herbeck DM. HIV-Positive
mothers’ communication about safer sex and STD pre-
vention with their children. J Fam Issues. 2012;33
(2):136—157.

31. Green JC. Adopting a mixed methods way of
thinking. In: Mixed Methods in Social Inquiry. San Fran-
cisco, CA: Jossey-Bass; 2007:17—30.

32. Kanekar A, Sharma M, Wray J. Review of qualitative
studies of HIV related sexual practice among college
students and adolescents: directions for research. Calif J
Health Prom. 2009;7(1):99—110.

33. Pequegnat W, Page B, Strauss A, et al. Qualitative
inquiry: an underutilized strategy in AIDS research. In:
Pequegnat W, Stover E, eds. How to Write a Successful
Research Grant Application: A Guide for Social and
Behavioral Scientists. New York, NY: Plenum Press;
1995:97—112.

34. Kaiser Family Foundation. Talking with kids about
tough issues: a national survey of parents and kids.
Available at: http://www.kff.org/youthhivstds/1460-
index.cfm. Accessed August 31, 2011.

35. Centers for Disease Control and Prevention. HIV in
the United States: at a glance. Available at: http://www.
cdc.gov/hiv/resources/factsheets/us.htm. Accessed
August 31, 2011.

36. Baltes PB. Theoretical propositions of life-span
developmental psychology: on the dynamics between
growth and decline. Dev Psychol. 1987;23(5):611—626.

37. Nachshen JS, Woodford L, Minnes P. The Family
Stress and Coping Interview for families of individuals
with developmental disabilities: a lifespan perspective
on family adjustment. J Intellect Disabil Res. 2003;47(4-5):
285—290.

38. NVivo [computer program]. Version 8.0. Cam-
bridge, MA: QSR International; 2008.

39. Sowell RL, Seals BF, Phillips KD, Julious CH.
Disclosure of HIV infection: how do women decide to
tell? Health Educ Res. 2003;18(1):32—44.

40. Edwards LL. HIV Prevention Communication in
Families Affected by HIV/AIDS. [dissertation]. Champaign,
IL: University of Illinois at Urbana-Champaign; 2012.

41. Sales JM, Milhausen RR, Wingood GM, DiClemente
RJ, Salazar LF, Crosby RA. Validation of a parent-
adolescent communication scale for use in STD/HIV
prevention interventions. Health Educ Behav. 2008;35
(3):332—345.

42. DiIorio C, Dudley WN, Wang DT, et al. Measure-
ment of parenting self-efficacy and outcome expectancy
related to discussions about sex. J Nurs Meas. 2001;9(2):
135—149.

43. Charmaz K. Constructing Grounded Theory: A
Practical Guide through Qualitative Analysis. Thousand
Oaks, CA: Sage Publications; 2006:42—71.

44. MacQueen KM, McLellan E, Kay K, Milstein B.
Codebook development for team-based qualitative anal-
ysis. Field Methods. 1998;10(2):31—36.

45. Cohen J. A coefficient of agreement for nominal
scales. Educ Psychol Meas. 1960;20(1):37—46.

46. Baron RM, Kenny DA. The moderator-mediator
variable distinction in social psychological research:
conceptual, strategic, and statistical considerations.
J Pers Soc Psychol. 1986;51(6):1173—1182.

47. Murphy DA. HIV-positive mothers’ disclosure of
their serostatus to their young children: a review. Clin
Child Psychol Psychiatry. 2008;13(1):105—122.

48. O’Sullivan LF, Meyer-Bahlburg HF, Watkins BX.
Mother-daughter communication about sex among urban
African American and Latino families. J Adolesc Res.
2001;16(3):269—292.

49. Crosby RA, DiClemente RJ, Wingood GM, Lang DL,
Harrington K. Infrequent parental monitoring predicts
sexually transmitted infections among low-income Afri-
can American female adolescents. Arch Pediatr Adolesc
Med. 2003;157(2):169—173.

50. Miller BC, Benson B, Galbraith KA. Family re-
lationships and adolescent pregnancy risk: a research
synthesis. Dev Rev. 2001;21(1):1—38.

51. Rotheram-Borus MJ, Lee MB, Gwadz M, Draimin B.
An intervention for parents with AIDS and their adolescent
children. Am J Public Health. 2001;91(8):1294—1302.

52. Fishbein M, Triandis H, Kanfer F, et al. Factors
influencing behavior and behavior change. In: Baum A,
Revenson T, Singer J, eds. Handbook of Health Psychology.
2nd ed. Mahwah, NJ: Erlbaum; 2001:3—16.

53. Goldsmith DJ. Communicating Social Support. New
York, NY: Cambridge University Press; 2004:25—51.

54. Murphy DA, Armistead L, Marelich WD, Payne DL,
Herbeck DM. Pilot trial of a disclosure intervention for
HIV+ mothers: the TRACK program. J Consult Clin
Psychol. 2011;79(2):203—214.

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http://www.kff.org/youthhivstds/1460-index.cfm

http://www.kff.org/youthhivstds/1460-index.cfm

http://www.cdc.gov/hiv/resources/factsheets/us.htm

http://www.cdc.gov/hiv/resources/factsheets/us.htm

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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 inter-
vention 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: aheeren@asc.upenn.edu

Innovation � The European Journal of Social Science Research
Vol. 24, Nos. 1�2, March�June 2011, 199�208

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

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, Nöstlinger

and Colebunders 2006) and is 29% in Uganda (Bikaako-Kajura et al., 2006). In the

200 G.A. Heeren

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

Innovation � The European Journal of Social Science Research 201

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 (Abadı́a-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-

202 G.A. Heeren

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.

Innovation � The European Journal of Social Science Research 203

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

204 G.A. Heeren

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 psycho-
logical 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

Innovation � The European Journal of Social Science Research 205

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

Abadı́a-Barrero, C.E. and Larusso, M.D., 2006. The disclosure model versus a developmental
illness experience model for children and adolescents living with HIV/AIDS in São Paulo,
Brazil. AIDS patient care STDS, 20 (1), 36�43.

Arun, S., Singh, A.K., Lodha, R., and Kabra, S.K., 2009. Disclosure of the HIV infection
status in children. Indian journal of pediatrics, 76 (8), 805�808.

Bachanas, P.J., et al., 2001. Predictors of psychological adjustment in school-age children
infected with HIV. Journal of pediatric psychology, 26, 343�352.

Battles, H.B. and Wiener, L.S., 2002. From adolescence through young adulthood:
psychological adjustment associated with long-term survival of HIV. Journal of adolescent
health, 30, 161�168.

Bibace, R. and Walsh, M.E., 1980. Development of children’s concepts of illness. Pediatrics, 66
(6), 912�917.

Bikaako-Kajura, W., et al., 2006. Disclosure of HIV status and adherence to daily drug
regimens among HIV-infected children in Uganda. AIDS and behavior, 10 (4 Suppl.),
S85�93.

Blasini, I., et al., 2004. Disclosure model for pediatric patients living with HIV in Puerto Rico.
Journal of developmental and behavioral pediatrics, 25 (3), 181�189.

Bluebond-Langner, M., 1978. The private worlds of dying children. Princeton, NJ: Princeton
University Press.

Bradshaw, D., et al., 2003. Initial burden of disease estimates for South Africa 2000. South
Africa medical journal, 93 (9), 682�688.

Campbell, C., et al., 2005. ‘‘I have an evil child at my house’’: stigma and HIV/AIDS
management in a South African community. American journal of public health, 95 (5),
808�815.

Chesler, M.A., Paris, J., and Barbarin, O.A., 1986. ‘‘Telling’’ the child with cancer: parental
choices to share information with ill children. Journal of pediatric psychiatry, 11 (4),
497�516.

Claflin, C.J. and Barbarin, O.A., 1991. Does telling lies protect more? Relationships among
age, information disclosure, and what children with cancer see and feel. Journal of pediatric
psychiatry, 16, 169�191.

Cohen, J., et al., 1997. School-related issues among HIV-infected children. Pediatrics, 100 (1),
E8.

Corneli, A., et al., 2009. The role of disclosure in relation to assent to participate in
HIV-related research among HIV-infected youth: a formative study. Journal of the
International AIDS Society, 12 (1), 17.

Domek, G., 2010. Debunking common barriers to pediatric HIV disclosure. Brief report.
Journal of tropical pediatrics, 56 (6), 440�442.

206 G.A. Heeren

Flanagan-Klygis, E., et al., 2001. Disclosing the diagnosis of HIV in pediatrics. Journal of
clinical ethics, 12 (2), 150�157.

Funck-Brentano, I., 1995. Informing a child about his illness in HIV infection: words and
meaning. Psychiatrie enfant, 38 (1), 109�139.

Gaylin, W. and Macklin, R., eds., 1982. Who speaks to the child? The problem of proxy consent.
New York, NY: Plenum Press.

Gerson, A.C., Joyner, M., and Fosarelli, P., 2001. Disclosure of HIV diagnosis to children:
when, where, why and how. Journal of pediatric health care, 15, 161�167.

Horwood, C., et al., 2010. Routine checks for HIV in children attending primary health care
facilities in South Africa: attitudes of nurses and child caregivers. Social science and
medicine, 70, 313�320.

Hosegood, V., et al., 2007. Revealing the full extent of households’ experiences of HIV and
AIDS in rural South Africa. Social science and medicine, 65 (6), 1249�1259.

Instone, S., 2000. Perceptions of children with HIV infection when not told for so long:
implications for diagnosis disclosure. Journal of pediatric health care, 12, 235�243.

Kietzman, R., 2008. Ethical issues concerning disclosure of HIV diagnoses to prenatally
infected children and adolescents. Journal of clinical ethics, 1991, 31�42.

Kouyoumdjian, F.G., Meyers, T., and Mitshizana, S., 2005. Barriers to disclosure to children
with HIV. Journal of tropical pediatrics, 51 (5), 285�287.

Lesch, A., et al., 2007. Paediatric HIV/AIDS disclosure: towards a developmental and process-
oriented approach. AIDS care, 19 (6), 811�816.

Lester, P., et al., 2002a. When the time comes to talk about HIV: factors associated with
diagnostic disclosure and emotional distress in HIV-infected children. Journal of acquired
immune deficiency syndrome, 31, 309�317.

Lester, P., et al., 2002b. Diagnostic disclosure to HIV-infected children: how parents decide
when and what to tell. Clinical child psychology and psychiatry, 7 (1), 85�99.

Lwin, R. and Melvin, D., 2001. Paediatric HIV infection. Journal of child psychology and
psychiatry, 42 (4), 427�438.

Maman, S., Abler, L., Parker, L., Lane, T., Chirowodza, A., and Ntogwisangu, J., 2009. A
comparison of HIV stigma and discrimination in five international sites: the influence of
care and treatment resources in high prevalence settings. Social science and medicine, 68
(12), 2271�2278.

Mellins, C.A., et al., 2002. Patterns of HIV status disclosure to perinatally HIV-infected
children and subsequent mental health outcomes. Clinical child psychology and psychiatry, 7
(1), 101�114.

Moodley, K., et al., 2006. Paediatric HIV disclosure in South Africa � caregivers’ perspectives
on discussing HIV with infected children. South Africa medical journal, 96 (3), 201�204.

Myer, L., et al., 2006. Healthcare providers’ perspectives on discussing HIV status with
infected children. Journal of tropical pediatrics, 52 (4), 293�295.

Nagler, S.F., Adnopoz, J., and Forsyth, B.W.C., 1995. Uncertainty, stigma and secrecy:
psychological aspects of AIDS for children and adolescents. In: S. Geballe, J. Gruendel, and
W. Andiman, eds. Forgotten children of the AIDS epidemic. New Haven: Yale University
Press, 71�82.

Nam, S.L., et al., 2009. Discussing matters of sexual health with children: what issues relating
to disclosure of parental HIV status reveal. AIDS care, 21 (3), 389�395.

National Department of Health, South Africa, 2008. Report: the national HIV and syphilis
prevalence survey South Africa. Available from: http://data.unaids.org/pub/Report/2008/
20080904_southafrica_anc_2008_en

Nehring, W.M., Lashley, F.R., and Malm, K., 2000. Disclosing the diagnosis of pediatric HIV
infection: mothers’ views. Journal of social pediatric nursing, 5 (1), 5�14.

Nöstlinger, C. and Colebunders, R., 2006. Informing children of their HIV status. Lancet, 368
(9534), 447.

Oberdorfer, P., et al., 2006. Disclosure of HIV/AIDS diagnosis to HIV-infected children in
Thailand. Journal of paediatrics and child health, 42 (5), 283�288.

Orne-Gliemann, J., et al., 2008. Children and HIV/AIDS: from research to policy and action
in resource-limited settings. AIDS, 22 (7), 797�805.

Innovation � The European Journal of Social Science Research 207

http://data.unaids.org/pub/Report/2008/20080904_southafrica_anc_2008_en

http://data.unaids.org/pub/Report/2008/20080904_southafrica_anc_2008_en

Rollins, N., et al., 2007. Surveillance of mother-to-child transmission prevention programmes
at immunization clinics: the case for universal screening. Bulletin of the World Health
Organization, 85 (4), 289�296.

Schulte, A., 2002. Consensus versus disagreement in AIDS-related stigma; a comparison of
reactions to AIDS and cancer patients. Sociological perspectives, 45 (1), 81�104.

Sherman, B.F., et al., 2000. When children tell their friends they have AIDS: possible
consequences for psychological well-being and disease progression. Psychosomatic medicine,
62, 238�247.

Simbayi, L.C., et al., 2007. Internalized stigma, discrimination, and depression among men
and women living with HIV/AIDS in Cape Town, South Africa. Social science and medicine,
64 (9), 1823�1831.

Spinetta, J.J., 1980. Disease-related communication: how to tell. In: J. Kellerman, ed.
Psychological aspects of childhood cancer. Springfield, IL: Charles C. Thomas, 257�269.

Spinetta, J. and Maloney, J., 1975. Death anxiety in the outpatient leukemic child. Pediatrics,
56, 1034�1037.

Spinetta, J.J. and Maloney, L.J., 1978. The child with cancer: patterns of communication and
denial. Journal of consultant clinical psychology, 46 (6), 1540�1541.

Thorne, C., Newell, M.-L., and Peckham, C.S., 2000. Disclosure of diagnosis and planning for
the future in HIV-affected families in Europe. Child: care health and development, 26 (1),
29�40.

Turner, B.J., et al., 1996. Health care of children and adults with acquired immunodeficiency
syndrome. A population-based analysis. Archives of pediatric and adolescent medicine, 150
(6), 615�622.

UNAIDS, 2009. AIDS academic update. UNAIDS/09.36E/JC1700E. WHO: Geneva.
Uys, L., et al., 2005. Eating plastic, winning the lotto, joining the WWW: descriptions of HIV/

AIDS in Africa. Journal of the Association of Nurses in AIDS Care, 16 (3), 11�21.
Vaz, L., et al., 2008. The process of HIV status disclosure to HIV-positive youth in Kinshasa,

Democratic Republic of the Congo. AIDS care, 20 (7), 842�852.
Vaz, L.M., et al., 2010. Telling children they have HIV: lessons learned from findings of a

qualitative study in sub-Saharan Africa. AIDS patient care STDS, 24 (4), 247�256.
Visser, M.J., et al., 2008. To tell or not to tell: South African women’s disclosure of HIV status

during pregnancy. AIDS care, 20 (9), 1138�1145.
Waechter, E., 1973. Children’s awareness of fatal illness. American journal of nursing, 71,

1168�1172.
Wiener, L.S., et al., 1996. Factors associated with disclosure of diagnosis to children with HIV/

AIDS. Pediatric AIDS HIV infection, 7 (5), 310�324.
Wiener, L., Septimus, A., and Grady, C., 1998. Psychosocial support and ethical issues for the

child and family. In: P. Pizzo and K. Wilfert, eds. Pediatric AIDS: the challenge of HIV
infection in infants, children, and adolescents. Baltimore, MD: Williams and Wilkins,
703�727.

Wiener, L., et al., 2008. How I wish to be remembered: the use of an advance care planning
document in adolescent and young adult populations. Journal of palliative medicine, 11 (10),
1309�1313.

208 G.A. Heeren

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Discussing matters of sexual health with children: what issues relating to disclosure of parental

HIV status reveal

Sara Liane Nam
a,b

*, Katherine Fielding
a
, Ava Avalos

b,c
, Tendani Gaolathe

c
, Diana Dickinson

b,d
, and

Paul Wenzel Geissler
e

a
Infectious Diseases Epidemiology Unit, London School of Hygiene and Tropical Medicine, London, UK;

b
The ART-LINC

Collaboration of the International Epidemiology Database to Evaluate AIDS (IeDEA);
c
Adult Infectious Diseases Care Centre,

Princess Marina Hospital, Ministry of Health, Gaborone, Botswana, Africa;
d
Independence Surgery, Primary Health, Gaborone,

Botswana, Africa;
e
Health Policy Unit, London School of Hygiene and Tropical Medicine, London, UK

(Received 21 November 2007; final version received 12 June 2008)

Little is published about the disclosure of parents’ own HIV status to their children in Africa. Research shows that
keeping family secrets from children, including those related to a parent’s HIV status, can be detrimental to their

psychological well-being and to the structure of the family. Further, children with HIV-positive parents have been
shown to be more vulnerable to poorer reproductive health outcomes. This qualitative study in Botswana
conducted in-depth interviews among 21 HIV-positive parents on antiretroviral therapy. The data revealed that

parents found discussing the issue of HIV with children difficult, including disclosing their own HIV status to them.
Reasons for disclosing included: children being HIV positive, the rest of the family knowing, or the parent
becoming very sick. Reasons for not disclosing included: believing the child to be too young, not knowing how to

address the issue of HIV, that it would be ‘‘too painful’’ for the child/ren. Concern that other people might find out
about their status or fear of children experiencing stigmatising behaviour. Interviews elucidated the difficulty that
parents have in discussing their own HIV status and more general sexual health issues with their children. Parents

and other guardians require support in managing age-appropriate disclosure to their children. This may further
enable access to forums that can help children cope with their fears about the future and develop life skills in
preparation for dealing with relationships of a sexual nature and sexual health as children move into adulthood. In
developing such support mechanisms, changing family roles in Botswana need to be taken into consideration and

the role of other family members in the upbringing of children in Tswana society need to be recognised and utilised.

Keywords: HIV/AIDS; disclosure; children; ART; Africa; Botswana

Introduction

HIV-positive parents taking antiretrovirals are faced
with the difficult decision of whether and what details
to share about their HIV with their children. Keeping
family secrets can be destructive to childrens’ well-
being and to the family structure (Cottle, 1980) and
the related anxiety can lead to isolation and disen-
gagement from possible sources of support for
children (Siegel & Freund, 1994). Interviews with
children orphaned due to HIV in sub-Saharan Africa

reveal that non-disclosure of parental HIV status
adversely affected their ability to cope with their
parent’s illness or subsequent death (FHI, 2003;
Wood, Chase, & Aggleton, 2006). Additionally, a
growing body of evidence demonstrates increased
sexual and reproductive health risks among children
who are vulnerable or orphaned due to HIV (Gregson
et al., 2005; Nyamukapa et al., 2008).

Some studies have investigated African adult HIV
disclosure (Brou et al., 2007; Maman, Mbwambo,

Hogan, Kilonzo, & Sweat, 2001; Maman & Medley,

2004; Norman, Chopra, & Kadiyala, 2007; Olley,

Seedat, & Stein, 2004; Sagay et al., 2006; Skogmar

et al., 2006) and some research describes disclosure to

children of the child’s own HIV-positive status

(Kouyoumdjian, Meyers, & Mtshizana, 2005; Myer,

Moodley, Hendricks, & Cotton, 2006). A review of US

studies found that by age 12�13 years, 84% of HIV-
positive mothers had disclosed their own HIV status to

their children and mean ages of children disclosed to

ranged from 7 to 10 years (Murphy, Steers, & Dello

Stritto, 2001). A Belgian study found that disclosure of

a parent HIV-positive status among African migrant

families was lower than disclosure among European

families (5% compared to 20.5%, respectively) (Nos-

tlinger et al., 2004). However, there is little research

about disclosure of parental HIV status to their

children in Africa.
In other settings, children who have been told their

parents are HIV positive have shown lower levels of

*Corresponding author. Email: sara.nam@lshtm.ac.uk

AIDS Care
Vol. 21, No. 3, March 2009, 389�395

ISSN 0954-0121 print/ISSN 1360-0451 online

# 2009 Taylor & Francis

DOI: 10.1080/09540120802270276

http://www.informaworld.com

http://www.informaworld.com

aggression and more positive self-esteem than those
from whom the information has been kept (Murphy
et al., 2001). Other research found that adolescents
with infected mothers experienced more difficulties
with psychosocial adjustment (more symptoms of
externalising and internalising problems, less social
and cognitive competence) compared to those with
non-infected mothers but that depression was higher
among adolescents who were informed of their par-
ents’ status compared to those who were not informed
(Armistead & Forehand, 1995; Forehand et al., 1998).
The decision whether to disclose has been shown to be
partly based on the child’s perceived maturity and
emotional stability and is more common when chil-
dren are: older; female; have experienced negative
family life events or who display more problem
behaviour. Parents who disclosed tend to: have larger
social networks; perceive that their children are
experiencing HIV-related stigma; experience less
stigma, or alternatively have higher perceived stress
levels and are less effective at managing parenting
demands. Disclosure has also been associated with
income, perceived severity of physical symptoms and
negative family life events (Armistead, Tannenbaum,
Forehand, Morse, & Morse, 2001; Lee & Rotheram-
Borus, 2002; Ostrom, Serovich, Lim, & Mason, 2006).

Decisions by parents not to disclose are reportedly
in order to shelter children from stigma or to allow
them a carefree childhood. Among the possible
detrimental impacts of disclosure are: pressure to
keep it a secret; real or perceived stigma; stress and
anxiety (Cree, Kay, Tisdall, & Wallace, 2006; Murphy,
2008). Other stress triggers identified among children
in the USA and Africa include fear of: the anticipation
of a parent’s death; future losses and the need to adopt
a more ‘grown up’ role as a carer (FHI, 2003; Reyland,
Higgins-D’Alessandro, & McMahon, 2002). Parents
are, however, aware of the dangers of non-disclosure,
particularly that children might discover the HIV-
positive status of parent(s) from another source
(Nostlinger et al., 2004).

In the era of HIV in Botswana where prevalence is
estimated at 24% (UNAIDS, 2007), family structural
transformations are dynamic and the relationship
between children, their parents and other family
members is evolving. Increasingly, women actively
choose to remain unmarried in order to avoid
patrilineal family expectations (such as reduced
custodial rights over children) and due to lack of
trust in men to remain faithful in an age of HIV
(Ingstad, 2002). As a result, maternal relatives are
more commonly involved in the lives of children
while fathers are becoming increasingly isolated from
their offspring (Livingstone, 2006). Children are often
sent to live with their grandparents freeing their

mother to seek employment (Ingstaad & Saugestad,
1984) or to live with aunts who may be in employ-
ment and can support their nieces and nephews
through school. A large number of children have at
least one parent who is HIV positive and parents will
need to develop strategies to discuss managing HIV
illness with their children, now that it has become a
chronic rather than necessarily terminal disease.

In this qualitative study examining factors relating
to antiretroviral therapy (ART) adherence, investiga-
tors asked participating parents about issues related to
disclosure to their children. The findings presented
here offer some insight as to why the rates of disclosure
of parental HIV status to children from this African
setting might be different to those from other settings.

Methods

The qualitative study examined issues related to
adherence to antiretrovirals among 32 adults from
two clinical sites in Gaborone, Botswana: the specia-
list ART public-sector adult Infectious Diseases Care
Centre (IDCC) and a privately run general family
practice, The Independence Surgery (IS). In February
2008 the IDCC had around 9,000 ART patients
receiving free antiretrovirals and the IS had around
1,500 patients taking antiretrovirals.

A grounded theory approach was adopted: in
brief, this methodology allows the hypothesis to
evolve as the researcher conducts the interviews
thereby allowing other important themes and con-
cepts to emerge during examination of the core topic
(‘‘adherence to antiretrovirals’’ in this study) (Glaser
& Strauss, 1967; Strauss & Corbin, 1998). Sampling
was purposive: adults who had been on antiretrovir-
als for at least six months were eligible to participate
and clinicians referred potential participants who
would provide a variety of good or poor adherence
experiences. A total of 32 people were interviewed, of
whom 21 were parents. One-on-one interviews lasting
between 45 and 75 minutes were conducted and
recorded. A translator was used when necessary.
The interviewer asked participants about: ideas and
beliefs about HIV and antiretrovirals; stigma; dis-
closure; social support and isolation; ideas and
practices regarding antiretroviral adherence; health-
seeking practices and hopes and fears for the future.
In addition, participants who were parents were
asked about disclosure of their own HIV status to
their children.

Data collection from all 32 participants continued
until new concepts related to the topic of focus
(adherence) ceased to arise. The coding was con-
ducted manually by the principal investigator and
interviewer for this study who identified key topics

390 S.L. Nam et al.

that arose from the interviews and transcripts. A
medical anthropologist guided data collection and
analysis through review of selected transcripts.
A code book was developed detailing the process of
coding following the principles outlined in grounded
theory (see Box 1). This paper presents the reasons
why participants who were parents chose to disclose
or not disclose their HIV status from their children
and highlights issues related to parent�child commu-
nication related to sexual health as important themes
that emerged. In common with other research, we
focus on children aged five years and older.

Results

Of the 21 parents interviewed, the mean age was 37
years (range: 22�55 years), 12 were female, 6 were
from the private sector and 13 (nine women, four
men) were single parents. Twelve were in full-time
employment, three were job seeking and all reported
feeling healthy. The 21 parents cared for 40 children;
24 were aged between 5 and 18 years old and 16
children were under five (who are not included in this
analysis). Three of the parents were responsible for
six step or adopted children. Of the 24 children aged
five or older, seven children (29%) had been told
about their parent’s HIV status; eight (33%) children
were thought to have guessed, and nine (38%) were
believed to be unaware of their parent’s HIV status
(Table 1). Three parents had children living with
other relatives, and they had not disclosed their HIV
status to their children. Overall, four parents (two
women and two men) had disclosed their status to
their children older than five years.

Reasons for disclosure

The reasons for disclosure included that the situation
was already known to other family members or
increasing ill-health of the parent. Two parents
became sick and felt that their children needed to
know the reason for their illness or told them in order
to impress upon the children the need for caution to
prevent them from becoming infected through caring
for a sick adult (Quote 1). One female participant had

two children aged nine and 15 who were known to be
HIV positive themselves. They were disclosed to not
by their HIV-positive mother but by her family, in
order to explain their own illnesses to them and to
impress upon them the need to take their medicines as
their mother had failed to tell her children at a time
when she was depressed.

Quote 1

‘‘I’ve told my kids. Because they had to take care of me

� they have to be aware, when I was very sick and I
didn’t want to put them at that risk. So I had to tell

them.’’ (38y old single mother of 12y and 16y

old).

Box 1: Basic Principles of Grounded theory.

‘‘Grounded Theory is an approach that is induc-
tively derived from the study of the phenomenon it
represents . . . it is discovered, developed, and provi-
sionally verified through systematic data collection
and analysis pertaining to that phenomenon
(where) data collection, analysis and theory stand
in a reciprocal relationship with each other.’’
(Glaser & Strauss, 1967).’’ Analysis takes place
through a series of various coding processes that
can occur simultaneously with data collection
allowing for the theory to develop and be ques-
tioned during the interviews.

Open coding is the analytic process through which
concepts are identified and their properties and
dimensions are discovered in data (properties are
the characteristics of a category, the delineation of
which defines and gives it meaning. Dimensions
are the range along which general properties of a
category vary, giving specification to a category
and variation to theory).

Selective coding is the process of integrating and
refining theory.

Axial coding is the process of relating categories to
their subcategories, where coding occurs around
the axis of a category, linking categories at the
level of properties and dimensions.

Table 1. Median ages of children five years or older who have not been told, were thought to have guessed or have been told
about their parents’ HIV status.

Children’s knowledge of parents’ HIV status:

Have not been told Thought to have guessed Have been told Total

Number of children (%) 9 (38%) 8 (33%) 7 (29%) 24 (100%)

Median age, years (range) 11.9 (5�17) 11 (11�17) 13.4 (9�17) 12 (5�17)

AIDS Care 391

Reasons for non-disclosure

Reasons parents gave for not disclosing to children
included feeling children were not old enough and not
knowing how to address the issue. Parents worried
that the knowledge would be ‘‘too painful’’ for the
child/ren and non-disclosure to other people was also
partly out of concern that the children might find
out from other people and face stigma as a result
(Quote 2).

Quote 2

‘‘I love my kids so much � they are still at school, and I
wouldn’t like for them to be hearing that ‘your mum is

positive’, and what, what, what. All these kind of

things.’’ (38y old single mother of 14y and 16y old).

Parents who had not disclosed their status ex-
pressed vague plans to talk to their children in the
future, but at the time of the interview preferred to
leave it to chance. Four parents said that their
children saw them taking the antiretrovirals and
had probably guessed what they were for, but had
not discussed HIV (Quote 3).

Quote 3

‘‘I guess the boy might know, but they [the children]

don’t ever ask me about it.’’ (48y old single mother of

a 17y old son and carer of 14y old niece).

Three of these parents said their children re-
minded them to take their pills, checked that they
had taken them or brought the pills to them with
water, even though they had not told their children
about their status. This made parents think that
these children had guessed their status although they
had not been explicitly told and the parents appre-
ciated this expression of concern by their children
(Quote 4).

Quote 4

‘‘I love it when my kids remind of the medication. Even

[the girl] she will just run to the bedroom and give me

a glass of water.’’ (38y old single mother of 14y and

16y).

Discussing sexual health

Parents described difficulties in addressing the issues
of HIV and sexual relationships with their children.
Parents expressed a preference to leave sexual and
reproductive health topics for schools to address,
although they were not clear about what was taught
at school in relation to these issues. Among those
who did discuss such topics, only one mother directly
addressed preventing pregnancy and protecting one-
self from HIV or other sexually transmitted infections
(Quote 5).

Quote 5

‘‘I haven’t shared anything with her [my daughter].

Fortunately I’ve never been sick. I always teach her

how she should handle herself. At school when some-

body gets injured I told her that she should she

shouldn’t touch somebody’s blood and she knows that

� she’s been told at school also. [I tell her] to respect
people who are positive � to like them. Those who come
out, like maybe she will meet one children at school and

that one kid is positive or her mum is positive – to love

them it’s something that could happen to anybody even

to her. So, she has to take care of herself. I started

talking to her about relationships when she was 9. The

whole reason was [that] kids ask things. You should

guide your child to choose what kind of a friend [she]

should make. People think that when you talk to a child

about a relationship, you are teaching her to do that

[develop sexual relationships], but you are not. But

you are teaching her [is] that she should be careful in

choosing friends.’’ (37y old single mother of a 13y

old).

Three parents felt it was not necessary to talk to
their children about protecting themselves from HIV
because they were ‘‘good’’ children and such studious
and well-behaved children who were not considered
to be at risk of HIV. Conversely, parents felt they
would be more likely to discuss the ‘‘dangers’’ of HIV
and pregnancy if a child was considered ‘‘naughty’’ or
‘‘troublesome’’ or who spent time with friends whom
parents considered inappropriate (Quote 6). Two
parents described discussing HIV in general as an
educational intervention or to prepare the children
for the uncertain future.

Quote 6

‘‘The eldest girl who is 15, ah! She doesn’t really seem

to be interested in most of those things she’s the type of

person who gets 99% at school every time so in her I

don’t see much of a problem she’s quite well educated.

She’s very disciplined. The problem may arise form the

last born [11y] � hey! That one she needs lots of
guidance she was clever at school, but she’s not good,

and, eish! some of [her friends] are older than her, you

know, so she joined those instead of learning [from]

her sister this one is going to give us problems, so we

need to find information and start guiding her now.’’

(38y old father of three).

Discussion

This study found that HIV-positive parents taking
antiretrovirals had difficulty discussing their HIV
status with their children, as has been found among
African immigrants overseas (Myer et al., 2006). This
study is limited by its small sample size but even so,
the depth of information gathered reveals parental
inhibition about discussing reproductive and sexual

392 S.L. Nam et al.

health with their children. In common with other

research (Lee & Rotheram-Borus, 2002), parents in

this study disclosed their HIV status in response to

their own worsening health and appeared more likely
to disclose to older (median age 14 years), rather than

younger (median age 11 years) children. Parents also

confirmed findings from other studies for the reasons

not to disclose their HIV status. This included
wanting children to have a carefree childhood,

children being too young, not wanting to worry older

children and not wanting children to be hurt by the

reaction of others (Nostlinger et al., 2004).
Research from the USA has found that adoles-

cents who knew their parents’ HIV status fared no

worse in terms of emotional distress, self-esteem or

parental bonding than those who had not been told

(Lee & Rotheram-Borus, 2002). In contrast, unstable
family circumstances and failure to discuss family life

issues have been negatively associated with adolescent

sexual behaviour in West Africa (Odimegwu,

Solanke, & Adedokun, 2002).
Respect for one’s elders, and adult avoidance of

discussion about intimate issues has created an un-

communicative environment about sexuality in Africa

even in the era of HIV (Babaloa, Vondrasek, & Brown,
2001; Fortes, 1965). In Botswana, it is generally

considered inappropriate for children to discuss sexual

matters with their mothers, even more so with their

fathers. Although parents in this study were aware that
their children were taught about HIV at school, they

did not know what they were learning. The difficulty

that parents have in talking to children about their HIV

has also been recorded in Zambia where it resulted in
poor succession planning (FHI, 2003).

The need for family-based, intergenerational

HIV-treatment programmes has been recognised

(Rotheram-Borus, Flannery, Rice, & Lester, 2005).

Parents need age-appropriate support about when,
how and what to tell their children about their own

HIV status, and about the disease generally. Parents

need guidance on managing children’s responses, and

on planning for the future. Additionally, in the
development of support mechanisms to advise guar-

dians on how to discuss HIV and sexual health in

general with children, the changing family roles and

typical intergenerational modes of communication
need to be taken into consideration. This might

contribute to providing vulnerable children (and

orphans) with access to life skills to mitigate the

impact of their vulnerability through identifying
suitable support mechanisms for them in addressing

these issues. For example, an appropriate counselling

model might consider the role of parental siblings and

their offspring in the typical upbringing of Batswana
children. This would include involving children’s
aunts, uncles and cousins in the disclosure process
and in their education in matters related to HIV and
reproductive health. The feature of openness between
alternate generations as seen in other African settings
(Whyte, Alber, & Geissler, 2004) is not a typical
feature in Tswana culture. With the increasing number
of grandparents taking care of their grandchildren,
mechanisms also need to address communication
between grandparents and grandchildren.

While Botswana strives to achieve an AIDS-free
generation by 2016, the children of this new genera-
tion will bear the responsibility of coping with parents
or carers who have HIV. Additionally, in order to
achieve the vision of 2016, children need to be
equipped with the necessary life skills to assist them
in protecting themselves from contracting and trans-
mitting HIV. Ensuring the provision of appropriate
forums for discussing sexuality could play an im-
portant part in promoting safer sexual practices
among children and young adults. This requires
dialogue not only through schools, churches, peers
and the media but also within and between family
members. Parents and other carers will need struc-
tured support in dealing with disclosure to children
and in discussing matters related to the reproductive
health with children.

Acknowledgements

The authors wish to acknowledge: all the staff, including
Ms Mpho Zwinila, and patients who took part in this
study. Funding was provided by the ART-LINC collabora-

tion of the International Epidemiology Database to Eval-
uate AIDS (IeDEA), the DfID HIV & STI Knowledge
Programme and GlaxoSmithKline. We further acknowl-

edge Belinda Beresford for her input to the paper and the
comments provided by the journal reviewers which
strengthened this manuscript.

References

Armistead, L., & Forehand, R. (1995).For whom the bell
tolls: Parenting decisions and challenges faced by

mothers who are HIV seropositive Clinical Psychology:
Science and Practice, 2(3), 239�250.

Armistead, L., & Tannenbaum, L., & Forehand, R., &
Morse, E., & Morse, P. (2001).Disclosing HIV status:

Are mothers telling their children? Journal of Pediatric
Psychology, 26(1), 11�20.

Babaloa, S., Vondrasek, C., & Brown, J. (2001). Factors

affecting sexual practices in West Africa � A positive
deviance approach. Paper presented at the American

AIDS Care 393

Public Health Association annual conference, 21�25
October, Atlanta, GA.

Brou, H., Djohan, G., Becquet, R., Allou, G., Ekouevi,

D.K., Viho, I., Leroy, V., Desgrees-du-Lou, A. (2007).

When do HIV-infected women disclose their HIV

status to their male partner and why? A study in a

PMTCT programme, Abidjan. PLoS Medicine, 4(12),

e342.
Cottle, T. (1980). Children’s secrets.

Cree, V., & Kay, H., & Tisdall, E., & Wallace, J.

(2006).Listening to children and young people affected

by parental HIV: Findings from a Scottish study AIDS

Care, 18(1), 73�76.
Family Health International (FHI). (2003). Voices from the

communities: The impact of HIV/AIDS on the lives of

orphaned children and their guardians. Bloomington,

Indiana: Author.
Forehand, R., & Steele, R., & Armistead, L., & Morse, E.,

& Simon, P., & Clark, L. (1998).The Family Health

Project: Psychosocial adjustment of children whose

mothers are HIV infected Journal of Consulting

Clinical Psychology, 66(3), 513�520.
Fortes, M. (1965). Some reflections on ancestor worship in

Africa. In M. Fortes & D. Dieterlen (Eds.), African

systems of thought (pp. 122�142). London: Oxford
University Press.

Glaser, B., & Strauss, A. (1967). The discovery of Grounded

Theory: Strategies for qualitative research.
Gregson, S., & Nyamukapa, C.A., & Garnett, G.P., &

Wambe, M., & Lewis, J.J., & Mason, P.R. (2005).HIV

infection and reproductive health in teenage women

orphaned and made vulnerable by AIDS in Zimbabwe

AIDS Care, 17(7), 785�794.
Ingstaad, B., & Saugestad, S. (1984). Unmarried mothers in

a changing Tswana society � implications for household
form and viability.

Ingstad, B. (2002). Presented at: The value of grandchildren:

Changing relationships between generations in Bots-

wana. Paper presented at the Association of Social

Anthropologists of the United Kingdon and the

Commonwealth conference, 7�12 April, Arusha, Tan-
zania.

Kouyoumdjian, F., & Meyers, T., & Mtshizana, S.

(2005).Barriers to disclosure to children with HIV

Journal of Tropical Pediatrics, 51(5), 285�287.
Lee, M.B., & Rotheram-Borus, M.J. (2002).Parents’ dis-

closure of HIV to their children AIDS, 16(16), 2201�
2207.

Livingstone, J. (2006). Maintaining local dependencies:

Elderly women and global rehabilitation agendas in

Southeastern Botswana. In J. Cole & D. Durham

(Eds.), Generations and globalization: Family, youth,

and age in the new world economy (pp. 164�189).
Indiana University Press.

Maman, S., & Mbwambo, J., & Hogan, N., & Kilonzo, G.,

& Sweat, M. (2001).Women’s barriers to HIV-1 testing

and disclosure: Challenges for HIV-1 voluntary coun-

selling and testing AIDS Care, 13(5), 595�603.

Maman, S., & Medley, A. (2004). Gender dimensions of HIV

status disclosure to sexual partners: Rates, barriers and

outcomes. A review paper.
Murphy, D. (2008).HIV-positive mothers’ disclosure of

their serostatus to their young children: A review

Clinical Child Psychology and Psychiatry, 13(1), 105�
122.

Murphy, D., & Steers, W., & Dello Stritto, M. (2001).Ma-

ternal disclosure of mothers’ HIV serostatus to their

young children Journal of Family Psychology, 15(3),

441�450.
Myer, L., Moodley, K., Hendricks, F., & Cotton, M.

(2006). Healthcare providers’ perspectives on discuss-

ing HIV status with infected children. Journal of

Tropical Pediatrics, 52(4), 293�295.
Norman, A., & Chopra, M., & Kadiyala, S. (2007).Factors

related to HIV disclosure in 2 South African commu-

nities American Journal of Public Health, 97(10), 1775�
1781.

Nostlinger, C., & Jonckheer, T., & De Belder, E., & Van

Winjgaerden, E., & Wylock, C., & Pelgrom, J.

(2004).Families affected by HIV: Parents’ and chil-

dren’s characteristics and disclosure to the children

AIDS Care, 16(5), 641�648.
Nyamukapa, C.A., & Gregson, S., & Lopman, B., & Saito,

S., & Watts, H.J., & Monasch, R. (2008).HIV-asso-

ciated orphanhood and children’s psychosocial dis-

tress: Theoretical framework tested with data from

Zimbabwe American Journal of Public Health, 98(1),

133�141.
Odimegwu, C., & Solanke, L., & Adedokun, A. (2002).Par-

ental characteristics and adolescent sexual

behaviour in Bida local government area of Niger

State, Nigeria African Journal of Reproductive Health,

6(1), 95�106.
Olley, B., & Seedat, S., & Stein, D. (2004).Self-disclosure of

HIV serostatus in recently diagnosed patients with

HIV in South Africa African Journal of Reproductive

Health, 8(2), 71�76.
Ostrom, R., & Serovich, J., & Lim, J., & Mason, T.

(2006).The role of sigma in reasons for HIV disclosure

and non-disclosure to children AIDS Care, 18(1), 60�
65.

Reyland, S.A., & Higgins-D’Alessandro, A., & McMahon,

T.J. (2002).Tell them you love them because you never

know when things could change: Voices of adolescents

living with HIV-positive mothers AIDS Care, 14(2),

285�294.
Rotheram-Borus, M.J., & Flannery, D., & Rice, E., &

Lester, P. (2005).Families living with HIV AIDS Care,

17(8), 978�987.
Sagay, A.S., & Musa, J., & Ekwempu, C.C., & Imade, G.E.,

& Babalola, A., & Daniyan, G. (2006).Partner dis-

closure of HIV status among HIV positive mothers in

Northern Nigeria. African Journal of Medicine and

Medical Sciences Suppl., 35, 119�123.
Siegel, K., & Freund, B. (1994).Parental loss and latency

age children In B. Dane, & C. Levine (Eds.), AIDS and

the new orphans.

394 S.L. Nam et al.

Skogmar, S., & Shakely, D., & Lans, M., & Danell, J., &

Andersson, R., & Tshandu, N. (2006).Effect of anti-
retrovrial treatment and counselling on disclosure of
HIV-serostatus in Johannesburg, South Africa AIDS
Care, 18(7), 725�730.

Strauss, A., & Corbin, J. (1998). Basics of qualitative
research: Techniques and procedures for developing
grounded theory (2nd ed.).

UNAIDS. (2007). Country situation analysis: Botswana.
UN Joint Programme on AIDS, Geneva, Switzerland.

Whyte, S., & Alber, E., & Geissler, P. (2004).Lifetimes

intertwined � Grandparents and grandchildren in
Africa Africa, 74(1), 1�5.

Wood, K., & Chase, E., & Aggleton, P. (2006).Telling the

truth is the best thing’: Teenage orphans’ experiences

of parental AIDS-related illness and bereavement in

Zimbabwe Social Science & Medicine, 63(7), 1923�
19331923�1933))))) (2006)..

AIDS Care 395