Consultation Implications in Context

 

You are a consulting psychologist for a local clinic and have been asked to follow up on a consultation you completed four years ago. There are current developments in this case that require further consideration. Please review the

PSY699 Week Five discussion case file (Links to an external site.)

or detailed information on the current case under review.

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.

• Should the staff encourage the daughter to inform her mother that she is sexually active?
• Would knowledge regarding her daughter’s sexual activity influence the mother’s stance regarding disclosure?
• Should the staff break confidentiality and inform the mother that her daughter is sexually active?
• Should the staff encourage the mother to inform the daughter of both her and her daughter’s HIV status?
• Does the daughter’s boyfriend have any rights in this situation? If so, what are they?
• Based on the daughter’s age, does the mother have a right to not disclose the diagnosis to her daughter?
• Does the mother have a right to the privacy regarding her own diagnosis, which could be threatened if her daughter learns of her own status?
• 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

 

Strategies and Outcomes of HIV Status Disclousure in HIV-Positive Young Women with Abuse Histories- Clum, G. A., Czaplicki, L., Andrinopoulos, K., Muessig, K., Hamvas, L., & Ellen, A. T. A. M. T. N. F. H. I. J. M. (2013).

Strategies and Outcomes of HIV Status Disclosure in HIV-Positive Young Women with Abuse Histories.

AIDS Patient Care & STDs, 27(3), 191–200. https://doi-org.proxy-library.ashford.edu/10.1089/apc.2012.0441 

HIV disclosure among HIV positive individuals:  a concept analysis

– Eustace, R. W., & Ilagan, P. R. (2010). HIV disclosure among HIV positive individuals: a concept analysis. Journal of Advanced Nursing (John Wiley & Sons, Inc.), 66(9), 2094–2103. https://doi-org.proxy-library.ashford.edu/10.1111/j.1365-2648.2010.05354.x 

 
Strategies and Outcomes of HIV Status Disclosure in HIV-Positive Young Women with Abuse Histories.
  
Strategies and Outcomes of HIV Status Disclosure in HIV-Positive Young Women with Abuse Histories.
Strategies and Outcomes of HIV Status Disclosure in HIV-Positive Young Women with Abuse Histories.

PSY699:Master of Arts in Psychology Capstone

Week Five Discussion Case File

Case Summary
Client: Victoria, 16-year-old HIV positive Latina

Consultation and suggested course of action regarding disclosure of Victoria’s HIV positive

status was received 4 years ago. Clinic decision was to honor mother’s request that HIV status not

be disclosed to her daughter Victoria, who was then 12 years old.

Current issue: Victoria is now 16 years old and has a boyfriend. Victoria has explained to her

physician at the clinic that she and her boyfriend are sexually active and do not always use

condoms. Victoria is unaware that she is HIV positive because of her mother’s insistence on non-

disclosure. The physician has not broken Victoria’s confidentiality about sexual activity, but has

expressed to her mother, Tina, that it is time for Victoria to know her diagnosis. This is based on

Victoria’s age, the statistics that many girls are sexually active at this age, and that Victoria could

endanger her partner(s). Tina continues to object to disclosure. She states Victoria’s regular

church attendance and her belief that Victoria will remain abstinent until marriage as evidence for

non-disclosure.

The staff is again wrestling with whether or not they should inform Victoria that she is HIV

positive. In doing so, they would enable her to make informed decisions about exposing her

boyfriend to the sexual transmission of HIV. However, her legal guardian (her mother Tina) does

not wish for this information to be disclosed to Victoria, who may still be considered a minor.

The clinic staff is concerned as this situation presents several ethical dilemmas and requires

further consultation.

Previous Case Summary (from 4 years ago)
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.

ORIGINAL PAPER

Older Adolescents’ Self-Determined Motivations
to Disclose Their HIV Status

Ann Gillard • Mark F. Roark

Published online: 29 June 2012

� Springer Science+Business Media, LLC 2012

Abstract Disclosure of HIV status is an important topic

for youth living with HIV/AIDS, yet theoretical frame-

works for understanding HIV disclosure motivations have

been poorly applied. Self-determination theory (SDT)

proposes that people are at optimal functioning when they

are engaging in activities that are interesting and enliven-

ing. This study utilized SDT to understand young adults’

motivations to disclose their HIV status. Interviews and

observations were conducted with nine youth aged 17–19

and two adult staff. Results indicate that SDT is useful for

understanding types of motivation (i.e., amotivation, con-

trolled, and autonomous motivation) to disclose. Amoti-

vation was the most common type of motivation, and came

from two recursive sources: fear of stigma and previous

experiences of others disclosing without their consent.

Controlled motivation to disclose occurred when partici-

pants were motivated to disclose because of reasons related

to other people, rather than internal or personal reasons,

and included the reasons of wanting to gain a closer rela-

tionship, reciprocate a shared secret, for psychological or

emotional relief, and for attention. Autonomous motivation

included two themes: the life perspective that ‘‘Having

HIV is just part of who I am,’’ and valuing educating others

because education was perceived as important and

beneficial to others. This study extends SDT into the

domain of HIV disclosure in older adolescents. People

providing guidance and support to older adolescents with

HIV/AIDS can use SDT to understand different motiva-

tions

to disclose.

Keywords Youth with HIV/AIDS � Self-determination
theory � Motivation � HIV disclosure � Older adolescents

Introduction

Disclosing one’s positive HIV status is typically difficult

and fraught with concern and fear regarding the outcomes

of the disclosure, which has some bearing on the motiva-

tion to disclose. While certain psychological and social

assets can buffer or ameliorate the worry, disclosure

remains a salient issue for people

living with HIV/AIDS.

Adolescents living with HIV/AIDS are especially vulner-

able to the omnipresent concern about disclosure due to

changes related to their ongoing social, psychological, and

cognitive development. Over the last 15 years, advances in

biological and behavioral treatments of HIV infection have

led to longer life spans, improved quality of life, and fewer

psychiatric problems for youth with HIV (Donenberg

2005). Still, disclosure remains a topic of major concern in

adolescents’ lives (Hosek et al. 2000; Wiener and Battles

2006) and the people who support them.

HIV Disclosure

HIV disclosure has been examined in a number of studies,

and some of these studies included influences on motiva-

tions to disclose. In a concept analysis, HIV disclosure was

found to be characterized by the attributes of: experiencing

an event, communicating something, timing, contextual

environment, protecting someone, relationship status and

improving something or being therapeutic (Eustace and

A. Gillard (&)
Social Sciences Department, Springfield College,

263 Alden Street, Springfield, MA 01109, USA

e-mail: anngillard@gmail.com

M. F. Roark

Department of Health, Physical Education, and Recreation, Utah

State University, 7000 Old Main Hill, Logan, UT 84322, USA

123

J Child Fam Stud (2013) 22:672–683

DOI 10.1007/s10826-012-9620-2

Ilagan 2010). Eustace and Ilagan (2010) also found that the

process of HIV disclosure contained antecedents and con-

sequences. Antecedents included disease acceptance, desire

to protect others and gain support, and individual, familial,

community, and social factors. Consequences could be

positive or negative regarding family, sexual partners,

friends, and community. In a qualitative study of South

African adolescents with HIV (Petersen et al. 2010), family

and peer support was an important factor in participants’

coping with their HIV status. Petersen et al. also found that

although HIV disclosure to schools by caregivers generally

resulted in greater academic support for the adolescents,

disclosure through gossip and rumor had the potential to

result in stigma and discrimination.

Without social support, youth with HIV can experience

feelings of social isolation, anxiety, and severe loneliness

(Travers and Paoletti 1999). In a meta-analysis of 21 studies

with 4,104 participants conducted by Smith et al. (2008), the

relationship between social support and disclosure across the

studies was significant but small. Smith et al. (2008) con-

cluded that when people living with HIV felt that HIV carried

a greater stigma, they reported less social support, and this

relationship was moderate. Greater HIV stigma also corre-

sponded to fewer disclosures of one’s HIV status. Although

this relationship was small, it was stable between studies.

Stigma is a major constraint to HIV disclosure.

Other factors influencing HIV disclosure have been

examined. In a qualitative study on why 29 adolescents

aged 12–20 disclosed their status, Michaud et al. (2009)

found no associations between the participants’ gender,

age, nationality, and family composition, and the extent

and target of disclosure. Michaud et al. also found that

younger adolescents’ disclosure was linked to that of the

parents, while older adolescents tended to independently

decide how and to whom to disclose. Decisions about

disclosure linked mostly to adolescents’ own representation

and family situation, and not to their level of maturity.

Michaud et al. (2009) found that there were two primary

types of disclosure: passive and active. Passive disclosure

related to situations (especially for younger adolescents)

when parents or caregivers handled the disclosure them-

selves or advised the adolescents how to disclose (such as

to teachers). Active disclosure related to adolescents

deciding to reveal their HIV status directly, such as to

friends or sexual partners. Understanding factors that

facilitate or inhibit adolescents’ self-determined motivation

to disclose is crucial for supporting the work of people who

serve youth with HIV/AIDS.

Self-Determination Theory

One theory that can be utilized to understand youths’

motivations to disclose their status to others is Self-

Determination Theory (Deci and Ryan 1985; Deci and

Ryan 2000). Self-determination theory (SDT) examines the

psychological processes that occur within the social con-

text and how these processes influence one’s reasons or

motivation to act or behave. In a HIV disclosure context,

we propose that self-determination represents motivation to

disclose that exists along a continuum varying along the

lines of motivation that more or less comes from the self,

promotes a sense of an internal locus of control, and is

regulated based on personal importance, conscious valuing,

and inherent satisfaction.

Six dimensions of motivation exist along the SDT

continuum, as seen in Fig. 1. Several scholars have

grouped the six types of motivation into three categories

for ease and simplicity in examining SDT-related concepts

(e.g., Boiche et al. 2008; Fortier et al. 2009; Gegenfurtner

et al. 2009; Ntoumanis and Standage 2009). The three

categories are amotivation, controlled motivation, and

autonomous motivation. Amotivation is a state in which

people do not act, act without intent, or lack the intention to

act (Pelletier et al. 2001) because the related behavior or

outcome is not valued. In the context of HIV disclosure,

amotivation reflects a lack of purpose or plan to disclose

status for any reason. Controlled motivation consists of

external and introjected motivation, and occurs when one

does something for an instrumental or non-internal pur-

pose. In the context of HIV disclosure, controlled moti-

vation reflects disclosing with approval-based pressure

with the purpose of gaining something from outside the

self, such as increased relationship status. Autonomous

motivation consists of identified, integrated, and intrinsic

motivation, and occurs when one does something because

the activity is inherently satisfying, enjoyable, and in line

with one’s value system. In the context of HIV disclosure,

autonomous motivation reflects disclosing because having

HIV is part of oneself and disclosure reflects the value and

goal of helping others. Autonomous and controlled moti-

vation types are not proposed to be mutually exclusive, but

are two independent types of orientations or constructs

(Boiche et al. 2008). In this study, autonomous motivation

reflects planning to disclose for purposes related to per-

sonal identity and values, and controlled motivation reflects

planning to disclose because disclosure would be expected

within the context of the relationship, not because disclo-

sure is valued for its own sake. The third type of motiva-

tion—amotivation—reflects lack of interest in or planning

to disclose.

Types of motivation have consequences for action. As

Ryan and Deci (2000, p. 69) explain, ‘‘Motivation pro-

duces.’’ In this study, the product of motivation is HIV dis-

closure (which could have positive or negative outcomes). In

the context of HIV disclosure, autonomous motivation pro-

duces the intent to disclose for the sake of disclosure,

J Child Fam Stud (2013) 22:672–683 673

123

controlled motivation produces the intent to disclose for the

sake of relationship status, and amotivation produces a lack

of disclosure. Regulatory processes (i.e., how outcomes are

pursued; Deci and Ryan 2000) for amotivation include the

experiences of feeling non-intentional, non-valuing,

incompetence, and a lack of control. Controlled regulatory

processes include the experiences of feeling compliance,

mostly external rewards and punishments, self-control, and

ego-involvement. Autonomous regulatory processes include

the experiences of feeling personal importance, conscious

valuing, congruence, awareness, synthesis with the self,

interest, enjoyment, and inherent satisfaction.

A wealth of research has demonstrated that more auton-

omous motivation is linked to better outcomes in a variety of

life domains (e.g., Boiche et al. 2008; Ntoumanis and Stan-

dage 2009; Smits et al. 2010; Soenens and Vansteenkiste

2005). SDT has been applied in a number of contexts such as

youth recreation (Baldwin and Caldwell 2003), sports (Spray

et al. 2006), education (Gegenfurtner et al. 2009), summer

camp (Roark et al. 2010), psychopathology (Niemiec et al.

2006), and work (Gagne and Deci 2005). However, SDT-

based studies on motivation have not been applied in the area

of HIV-status disclosure for youth. Applying SDT to HIV

disclosure for adolescents can provide a framework for

understanding this phenomenon.

Self-Determination Theory and HIV Disclosure

Individuals who regulate their behavior autonomously

choose to do so because of the personal importance of the

behavior for their health (Williams et al. 1998). Uysal et al.

(2010) conducted a SDT-based study on self-concealment

in a sample of mostly female college students. Self-con-

cealment was defined as the ‘‘tendency to keep distressing

personal information secret’’ (Uysal et al. 2010, p. 187),

and had a direct negative association with well-being.

Additionally, the researchers found that the association

between self-concealment and well-being were valid regard-

less of personality differences. However, the connection

between Uysal et al.’s study and the present study is ten-

uous because Uysal et al.’s sample included mostly female

college students and included measures about concealing

or sharing general personal information. Disclosure of HIV

status in particular is arguably more fraught than an ori-

entation to share or conceal general problems in one’s life.

While other SDT-based research has addressed the topics

of HIV medication adherence (Kennedy et al. 2004; Lynam

et al. 2009) and distress and well-being of gay men with

HIV (Igreja et al. 2000), to our knowledge, none have

addressed HIV

disclosure in older adolescents.

Accordingly, this study aimed to utilize SDT to under-

stand older adolescents’ motivations to disclose their HIV

status, using qualitative methods (Patton 2002; Yin 2003).

This study was grounded in previous research on the

developmental outcomes of summer camp participation

sponsored by an AIDS foundation in a major southern city

during 2007 and 2008 (Gillard et al. 2010, 2011). Although

not a focus of the previous research, the theme of HIV

disclosure emerged from youth participant data as an area

in need of further investigation. Qualitative approaches to

SDT (i.e., Dawes and Larson 2011; Fortier and Farrell

2009; Oliver et al. 2008; Perlman and Goc Karp 2010) have

been much less widely used than quantitative approaches,

and qualitative approaches were appropriate in this study

because of the focus on understanding motivations for HIV

disclosure in older adolescents.

Method

Procedures and Participants

The Springfield College Institutional Review Board

approved the study, and the AIDS foundation management

staff provided permission to conduct this research with

program participants. Data were collected at a program

operated by the AIDS foundation that was held in June

Intrinsic MotivationExtrinsic Motivation

Amotivation

Intrinsic
Regulation

External
Regulation

Introjected
Regulation

Identified
Regulation

Integrated
Regulation

Non-
Regulation

Most
Self-Determined

Least
Self-Determined

Fig. 1 The types of motivation and regulation within self-determination theory, along with their placement along the continuum of relative self-
determination (Deci and Ryan 2008a)

674 J Child Fam Stud (2013) 22:672–683

123

2010 and served 41 young adults aged 16–19 who were

selected through consultation with their caregivers and

health care providers and who voluntarily chose to attend.

Participant observations and semi-structured one-on-one

interviews with nine youth participants aged 17–19, and

interviews with two adult leaders were used to gather data.

The first author was a mentor in the program, which

entailed supervising participants throughout daily activi-

ties, driving participants to activities, and engaging in

activities such as discussions and educational and motiva-

tional workshops.

Prior to the first day of the program, the AIDS founda-

tion sent consent forms to parents and caregivers, and

collected signed forms upon participant arrival. On the first

night of the program, the first author explained the purpose

of the study to the group and that she would be approaching

several participants throughout the week to inquire about

their potential participation in interviews. The program

director and first author consulted about which participants

to approach for interviews to ensure a representative

sample of a range of attitudes about disclosure, and to

ensure that only those participants under age 18 who had

parental consent to participate would be approached. The

attitudes ranged from non-disclosed (except to health care

providers) to public disclosure. Throughout the program,

the first author approached individuals for interviews, and

those under age 18 provided assent if they had consent

forms signed by their parents or caregivers, or signed

consent forms if they were 18 or older. Nine participants

agreed to participate and none refused.

Semi-structured interviews lasted 10–60 min each.

Participants who were primarily amotivated to disclose

their HIV status gave shorter interviews, and participants

who had more of a range of motivations to disclose pro-

vided longer interviews. Interviews were typically con-

ducted in a quiet place in sight of, but out of earshot of

other participants. Examples of interview questions inclu-

ded: ‘‘Approximately how many people know about your

HIV status? How did they find out? What were their

reactions? What influenced your decisions to talk to people

about your status? What are your opinions about disclosing

your status in public, such as speaking in front of a group,

writing an article, or other ways?’’

See Table 1 for a summary of interview participants,

their demographic information, and their primary motiva-

tion types. The demographic and disclosure profiles of the

interview participants reflected those of the overall pro-

gram. Of the interview participants, three did not willingly

disclose their status to people outside of the program, three

disclosed to close friends and family, two disclosed only to

close family, and one disclosed frequently and publicly.

Participant observations centered on topics immediately

or tangentially connected to disclosure, such as youth-led

discussion workshops about disclosure held in meeting

rooms at the residence hall where the participants stayed

throughout the program, and the group’s visit to a city

council meeting where the AIDS foundation (but not

individual participants) was publicly recognized by the

council. The first author also recorded observations of

unplanned and unexpected situations regarding disclosure,

such as when the group attended a banquet at a restaurant

with members of the public in attendance, and one par-

ticipant became distraught because she believed that a

guest speaker identified members of the group as having

HIV. The purpose of the participant observations was to

triangulate the data and reduce the likelihood of misinter-

pretation, clarify meaning, and bring credibility to the

findings (Patton 2002). Participant observation data were

compared to interview data to verify results.

Data Analysis

Data were axially and selectively coded, and categories

were generated that related to the SDT concepts of amo-

tivation, controlled motivation, and autonomous motiva-

tion. Indicators were theoretically sampled that represented

Table 1 Interview participant information

Pseudonym Age Gender, race/ethnicity Perinatally or

behaviorally infected?

Found out status

within previous year?

Predominant type

of motivation

Gordon 17 Male, African American Behaviorally Yes Autonomous

Priscilla 18 Female, African American Perinatally No Controlled

Maribel 18 Female, Hispanic Perinatally No Controlled

Nate 18 Male, Hispanic Perinatally No Autonomous

Sasha 18 Female, African American Perinatally No Autonomous

Steve 18 Male, Hispanic Unknown No Amotivation

Tania 19 Female, African American Unknown No Amotivation

Tyrone 17 Male, African American Perinatally No Controlled

Vincent 18 Male, Hispanic Behaviorally Yes Amotivation

J Child Fam Stud (2013) 22:672–683 675

123

the concepts relevant to SDT, and their properties and

dimensions were compared until categorical saturation was

achieved (Strauss and Corbin 1998). The authors engaged

in a process to establish inter-rater reliability that consisted

of multiple readings of coded data and discussions to

establish that the codes related to the data and appropri-

ately represented SDT concepts. The first stage of the

process resulted in approximately 85 % agreement. After

consultation, the authors revised their codes to reflect

100 % agreement.

Construct validity was established in three ways to form

correct operational measures of the concepts of self-

determination, motivation, and disclosure: multiple sources

of evidence, chains of evidence, and member checks. First,

multiple sources of evidence (i.e., observations and inter-

views with adults and youth participants) were collected

and the researchers confirmed their convergence on the

same set of findings. Second, an established chain of evi-

dence was created through links between the questions

asked, data collected, and conclusions drawn to ensure a

logical, sequential process that could be anticipated and

reproduced by external auditors. Third, to improve the

credibility of the findings, the first author conducted

member checks with most of the participants from the 2010

program during focus groups held during the 2011 pro-

gram. Participants confirmed that the three types of moti-

vation related to their behaviors and attitudes about

disclosure. The analytic strategy to ensure internal validity

involved relying on the theoretical propositions of SDT to

make sense of the findings, and employed a constant

comparison approach to analysis (Strauss and Corbin

1998). Finally, this study includes a documented auditable

database available upon request to provide reliability. The

authors remained aware and reflexive of potential biases

throughout the study by keeping a researcher journal and

discussing findings with others who work with and conduct

research with youth with HIV/AIDS, and on SDT.

Results

Results of the data analysis revealed that participants

shared both actual past experiences or behaviors, and

intentions or attitudes about disclosing. The results focus

on actual past behaviors, but it is important to note that

attitudes were integral to participants’ explanations about

their motivations to disclose.

Amotivation

Amotivation occurs when individuals experience a lack of

intention and motivation to act (Deci and Ryan 2008a).

Explanations of why they felt amotivated to disclose were

the most frequently discussed by all participants, even

those who indicated that they were autonomously moti-

vated to disclose. Amotivation came from two recursive

sources: fear of stigma and previous experiences of others

disclosing without their consent. When others disclosed

without their consent, participants were less likely to dis-

close because they perceived a loss of control over infor-

mation shared and imagined negative reactions, further

reinforcing their amotivation to disclose. Results related to

amotivation had a global quality, wherein the participants

explained their lack of intention to disclose to people in

general, not specific and known people.

Participants reported feeling amotivated when others

disclosed their status for them, without their permission.

Even though participants wished to keep their status private

(i.e., ‘‘It’s my business’’), they often had no perceived or

real control over others’ actions. Peers and parents or

caregivers sometimes disclosed participants’ statuses

without their consent, leaving the participants to handle

whatever fall-out occurred and often fracturing the rela-

tionships. From observations of discussions about disclo-

sure, it appeared that there were slightly more instances of

disclosure without participant consent from parents and

close family members than by friends or peers. The neg-

ative reactions to disclosure thwarted the participants’

social-contextual environment that could have supported

autonomous motivation.

A participant in a group discussion about disclosure

described how she felt when her aunt told her that her

mother told her about her status: ‘‘It’s my business. For her

to tell her [shakes head and sucks teeth]. You can’t tell my

business, especially to someone I don’t like.’’ The partic-

ipant expressed bitterness about the incident that reinforced

her lack of intention to disclose to others; she believed that

if she told others, they might tell others without her per-

mission as her mother had done. ‘‘Vincent’’ provided this

experience at school as the reason for why he did not

disclose his status.

I moved over here to go to high school, and my dad

told my teachers, or someone in the school and it got

around, and all the kids were messing with me. Like I

went to school, I wasn’t expecting it. I went to school

one day and it was like that. They would make

comments in front of me, like loud enough so I could

hear, like ‘be careful, I heard that guy’s got a disease,

be careful, don’t eat at the same table because you

might get what he’s got.’ Then little by little they

started [saying] ‘‘HIV and AIDS.’’

Participants also discussed reasons they were amotivat-

ed to disclose because of specific examples of previous

experiences in which the person to whom they disclosed

reacted in negative ways. Implicit in these descriptions was

676 J Child Fam Stud (2013) 22:672–683

123

the belief that if their closest and caring family members

would reject them, they could expect nothing more from

people less close. For example, Vincent explained that his

father used to ‘‘give me hugs, kisses, take me out. But after

all this, everything stopped.’’ Later in the interview, Vin-

cent described his family interactions and said, ‘‘For a

while, they kind of rejected me and would keep their dis-

tance,’’ and did not want Vincent to touch his baby cousin.

Stories were common of family rejection based on inac-

curate knowledge of HIV transmission. ‘‘Sasha’’ expressed

anger and frustration about her grandmother over the years:

The only person who didn’t accept it [having HIV]

was my grandma, and she’s really distant from me.

She just started hugging me like this year ‘cause

[before] she thought she would get it. I remember

when we were little and we were at the pool and she

wouldn’t get in the pool ‘cause she thought she could

catch it thataway.

Hearing other people’s negative stories of disclosure

also promoted participants’ amotivation to disclose. For

example, while discussing the effects of her participation at

a camp for youth with HIV/AIDS on her decisions to dis-

close, ‘‘Maribel’’ explained, ‘‘It more scared me sometimes

though, all the stories that I heard [at camp]. So I was

always more cautious.’’ Maribel did not want those nega-

tive stories and consequences to happen to her, further

reinforcing her amotivation.

‘‘Gordon’’ summarized the attitude of many of the

program participants about why they had no intentions to

disclose, ‘‘I feel like, friends, especially the school I go to,

you tell one person somebody something, it go to one

person and the next person and it come back. And then you

never know how people gonna take it.’’ When asked why

they did not tell people their status, Gordon replied

‘‘Rejection,’’ and Maribel replied, ‘‘There are judgments

out there.’’ ‘‘Priscilla’’ was asked if she would ever speak

in public about her HIV status, and replied, ‘‘No. Because

the world is so cruel and I can only take so much. I can

only take so much.’’ Priscilla had recently graduated high

school after enduring 4 years of persistent stigma and

negative interactions because of her known positive HIV

status. Predominately amotivated participants believed that

they had a lack of control over the transmission of

knowledge about their HIV status, and over others’ reac-

tions to learning the news, so they had a lack of purpose or

plan to disclose status for any reason.

Controlled Motivation

Controlled motivation ‘‘involves behaving with the expe-

rience of pressure and demand toward specific outcomes

that comes from forces perceived to be external to the self’’

(Deci and Ryan 2008a, p. 14). Controlled motivation con-

sists of both external regulation in which one’s behavior is

controlled by external factors related to reward or punish-

ment, and introjected regulation in which the behavior

is related to avoidance of shame, approval-seeking, and

conditional self-esteem (Deci and Ryan 2008b). Results

indicated that controlled motivation to disclose HIV status

occurred when participants were motivated to disclose

because of reasons related to other people, rather than

internal or personal reasons. Controlled motivation to dis-

close HIV status included the reasons of wanting to gain a

closer relationship, reciprocate a shared secret, for psy-

chological or emotional relief, and for attention.

Disclosing to gain a closer relationship was the most

common theme in the category of controlled motivation.

Priscilla explained, ‘‘When I get ready to tell someone,

mainly it’s because I’m in a relationship with them …
because they wanted to be intimate.’’ Some participants

had ‘‘scripts’’ for disclosing, such as ‘‘Nate’’ who

explained, ‘‘Like, before I actually become officially, they

become officially my friend friend, I’ll kinda test them

out.’’ Maribel used a similar strategy to disclose, ‘‘I used

the whole hypothetical method, like ‘What if I told you

this, or what if I told you that?’ See how the person

responds to that to decide if I really want to come out and

tell them.’’

Often, participants discussed their attitudes about dis-

closing to gain a closer relationship. Vincent discussed

what it might be like making friends and disclosing to them

in college: ‘‘If they’re a good friend they have a right to

know so they can be a support system or they can keep

their distance from me or whatever.’’ Gordon explained

how relationships could be tested by disclosing: ‘‘If they

really love and care about you, they want to be with you.

But if they leave you, you know how they really feel. If

they really care, they’ll stay.’’

The theme of ‘‘reciprocity’’ emerged in several inter-

views and group discussions, and participants reported that

they often disclosed their status to another individual

because that person had first disclosed something private or

sensitive to them. Participants seemed to experience some

pressure to disclose to someone else, based on their per-

ceptions of the relationship, but disclosure was still vol-

untary to a limited degree. Feelings leading up to the

disclosure conversation were reported as containing a sense

of pressure or conflict, and lack of integration or comfort

with the self.

One program participant shared her criteria for dis-

closing her status in romantic and potentially sexual rela-

tionships: ‘‘If you’re together for a month, that shows a

level of commitment and you have a trust basis.’’ Priscilla

conveyed a specific situation: ‘‘I told this one dude because

he shared some personal information about being raped or

J Child Fam Stud (2013) 22:672–683 677

123

whatever, and I told him that ‘cause I guess I feel that I was

obligated to tell him that for some reason.’’ Later Priscilla

discussed what happened for her in a couple of her rela-

tionships: ‘‘You feel like he’s telling you everything about

him, and you’re telling him everything too, but if you don’t

tell him this it’s like a weight on your shoulders. You like,

‘I have to, I have to.’’’

A few instances emerged of disclosing for psychological

or emotional relief. Maribel expressed feelings of obliga-

tion to disclose her status to her friends as a way of

explaining why she took medicine while on overnight trips

or visits: ‘‘I didn’t want them to think I was taking drugs or

anything [laughs].’’ Telling her friends her status relieved

the burden of ‘‘sneaking around.’’ She explained that she

told her friends because ‘‘I didn’t see the point of that when

I already trusted them. So I might as well just tell them, and

I did so they would know and everything.’’ Similarly,

‘‘Tyrone’’ discussed in his interview his primary reason to

disclose to his best friend: ‘‘Get the weight off my shoul-

ders, then I would know what he was gonna say.’’ An adult

mentor explained that she observed that participants dis-

closed to cause ‘‘whatever questions people are asking to

stop.’’ Gordon disclosed to his guidance counselor to

relieve the pressure created as the counselor kept asking

him how he felt about being sick and sharing with Gordon

his own personal experiences with his father who had HIV.

Data analysis of controlled motivation to disclose

resulted in some minor themes that were inherently

untestable because the source of the information was sec-

ond-hand. First, disclosing to receive attention included the

receipt of awards and recognition for educating people

about HIV, disclosing for ‘‘shock value,’’ and legal obli-

gations to disclose. During an interview with Nate (who

expressed primarily autonomous motivation to disclose his

status), he shared that he had received several awards for

his volunteer work in educating people about HIV/AIDS.

He relayed in an interview and with another adult mentor

that his mother suggested that getting awards and recog-

nition was why he disclosed so publicly. However, Nate

railed against that accusation and was adamant that per-

sonal recognition or awards were not his purposes in his

public disclosure efforts. Additionally, one program par-

ticipant was perceived by adult mentors to disclose his HIV

status to ‘‘shock’’ others. According to one of the adult

mentors who knew him for several years, this participant

disclosed at assemblies at his school to gain social status,

pity, and attention. The adult mentor explained that for

some youth, ‘‘I think for some of them it’s reaching out.

The need of love. And if they disclose, would that person

feel sorry for them, and show them more love?’’ Finally,

during workshops with facilitators, several participants

raised questions about the requirement to disclose their

status to sexual partners because of legal obligations, which

reflected the potential for additional aspects of controlled

motivation to disclose. In sum, participants with predomi-

nantly controlled motivation disclosed because disclosure

was expected within the context of the relationship, not

because they valued disclosure.

Autonomous Motivation

Autonomous motivation ‘‘involves behaving with a full

sense of volition and choice,’’ (Deci and Ryan 2008a, p. 14).

Autonomous motivation consists of identified/integrated and

intrinsic regulation. Identified/integrated regulation refers to

behavior that, while somewhat influenced by extrinsic fac-

tors, is primarily sourced within the individual because of

valuing of activities that have personal importance or

because activities reflect their set of goals and values.

Intrinsic regulation refers to behavior done because of the

positive feelings associated with the behavior itself.

The category of autonomous motivation was the

smallest of all categories of motivation in terms of par-

ticipants sharing actual previous experiences. Rather, sev-

eral participants speculated on what they might do in the

future. Autonomous motivation included two themes: the

life perspective that ‘‘Having HIV is just part of who I am,’’

and valuing educating others because education was per-

ceived as important and beneficial to others. Education

consisted of talking to friends or strangers about HIV/AIDS

in general or in relation to participants’ personal experi-

ences. However, although the disclosure occurred by

choice, participants did not indicate enjoying or feeling

comfortable with the process of disclosure (with the

exception of Nate, discussed below). Rather, autonomously

motivated disclosure seemed to be a hardship that was

ultimately worthwhile because of its integration with the

self and alignment with personal values.

A few participants discussed their attitudes regarding how

living with HIV was integrated into their lives. Nate

explained his approach: ‘‘It’s kind of easy for me to tell

people because I’m a real person and if you don’t like me for

who I am, then obviously you might miss out on a very cool

person and maybe a longtime friend.’’ He also explained that

‘‘HIV’s not a death sentence, it’s a lifestyle … Just because I
have HIV doesn’t mean anything else … I’m not any dif-
ferent from anyone else.’’ Two participants discussed what

they thought about Nate’s approach and suggested that they

wanted to adopt his attitude. For example, Gordon shared his

plans for when he returned to school in the fall: ‘‘I’ll be …
saying ‘So what? I have it. I’ve been going to school with you

all year, and I’m still here. I eat so much food, I’m healthy.’

That’s why I think now I can tell people.’’

Some participants perceived disclosure as a necessary

opportunity and responsibility to educate others on an

important and potentially life-saving topic. Some interview

678 J Child Fam Stud (2013) 22:672–683

123

participants shared that they had used or planned to use the

opportunity to educate others about HIV/AIDS as a

springboard for disclosing their status. ‘‘Tania’’ explained

that she wanted to tell more people about her status because

she was ‘‘mad that people are clueless and ignorant.’’ Nate

frequently wore tank tops that revealed on his shoulder a

3-inch by 1-inch red AIDS ribbon tattoo. He used the

display of his tattoo as an invitation for others to ask him

about it, to talk about his status and how he acquired HIV,

and to answer questions. Nate frequently spoke to high

school classes and community groups about HIV/AIDS.

Discussing his decisions to disclose his status while

teaching classes about HIV/AIDS, Nate said, ‘‘I have the

choice not to tell them or to tell them. But I want to. I

should tell them because they’ll get more out of it [if I tell

them about my status], but I really don’t have to.’’

Two participants (Sasha and Nate) discussed instances

of public disclosure. Sasha discussed what happened when

she allowed her picture to be published on the front page of

a newspaper that mentioned her positive HIV status:

It made me feel better about myself because I don’t

like keeping secrets too much. ‘Cause at times I get

depressed and I keep too much inside and it just

overflows and I will break down. So I just wanted to

let that out, just a little bit.

Later in the interview, Sasha expressed nervousness but

openness to engaging in further public speaking at the

bequest of her doctor; she understood the decision to do so

to be her choice.

Other participants shared that they utilized opportunities

to disclose when the topic of HIV or AIDS emerged in social

situations. Some participants wanted to educate others

because they wanted their friends to know more about their

lives and not be worried for their health. Maribel discussed

the importance of education to reduce stereotypes and mis-

information, ‘‘Like how it can be transmitted. And how

nowadays, especially with technology and medicine, a per-

son can live a relatively normal life, it’s not like they’re in the

hospital or having a hard time.’’ Tyrone speculated on what

would happen when he told his best friend: ‘‘[He will]

probably will have the same response as everybody else, like

‘Oh, are you gonna die?’ Or [I will] have to explain to him the

whole, explain that the virus attacks the immune system.’’

Priscilla explained why it was so important to educate

others: ‘‘So they won’t have to go through the same thing

… So, I would hate that to happen to anybody, even my
worst enemy. I wouldn’t wish [HIV] on anybody.’’ Priscilla

shared a story of educating her friend that reflected a

conscious valuing of education:

I told one girl because she was really sexually active

and I was like ‘You have to stop. Because I can sit

here and tell you I have HIV.’ She said ‘Huh?’ I said

‘Yeah. It don’t mean that the person you’re sexually

active with will tell you.’

Sasha referred to her motivation to educate others as

wanting to ‘‘Put out a warning hoping that somebody else

would listen. To help save somebody else.’’ Sasha hoped to

educate others through her poetry so that they would

understand living with HIV/AIDS and ‘‘know how that is.’’

The most autonomously motivated participant was Nate,

as evidenced by his response to a question about what

makes it easier to tell people his status:

HIV is who I am and I do value it, and it’s something

I’ve been taught through my whole life since I got

diagnosed and my mom educated me ever since I was

diagnosed and I’ve been educated on it and it’s been

drilled in my head, like for years, and I research it

myself and I love doing it [educating others].

Nate demonstrated integrated motivation as he

explained his approach to education: ‘‘I’ll take all the

personal questions you want. It can be anything from me

having sex to I want to have a kid when I’m older. I don’t

mind, I will answer them with honesty.’’ In sum, instances

of autonomous motivation to disclose HIV status reflected

motivation that came from within the self, with full choice

and volition, and for purposes related to personal identity

and educational goals.

Discussion

This study utilized SDT to understand young adults’ moti-

vations to disclose their HIV status. The results of this study

indicate that SDT is useful for understanding types of self-

determined motivation (i.e., amotivation, controlled, and

autonomous motivation) to disclose. Amotivation was the

most commonly reported type of motivation, and involved

fear of stigma and rejection based on real or perceived

instances of information shared by others without consent in

personally important social contexts, and feelings of loss of

control over information shared about their status. The

accumulation of negative experiences over time seemed to

reinforce in participants feelings of amotivation. Controlled

motivation involved participants wanting to disclose to gain

a closer relationship, reciprocate a shared secret, for psy-

chological or emotional relief, and for attention. Autono-

mous motivation involved participants’ life perspectives that

‘‘Having HIV is just part of who I am,’’ and having values and

goals to educate others. Given that a fundamental premise of

SDT is that people are naturally inclined toward growth and

well-being, opportunities to experience active or autono-

mous motivation are warranted, especially for adolescents.

J Child Fam Stud (2013) 22:672–683 679

123

Disclosing one’s HIV status because of relationship-

related external motivations reflected controlled motiva-

tion. In this study, disclosure was a means to an end for

most participants, and was not done for any inherent sat-

isfaction found in disclosure. Therefore, we conceptualized

controlled motivation as a type of motivation intended to

bring others closer. That is, the motivation to disclose was

controlled by intentions to manage relationships with oth-

ers. This particular finding extends the concept of con-

trolled motivation in the field of SDT. The motivation to

disclose to deepen a relationship, reciprocate a shared

secret, to gain psychological or emotional relief, and to

garner attention has strong connections to other research on

social support and HIV disclosure. For example, social

support in the context of HIV/AIDS can be important for

health outcomes because members of an individual’s social

network who are aware of individuals’ HIV status can

provide encouragement and support for medication adher-

ence (Roberts and Mann 2000).

Disclosing one’s HIV status for inherent personal sat-

isfaction reasons reflected autonomous motivation. In this

study, disclosure was personally valuable because of its

relation to personal identity and as a means to educate

others about HIV/AIDS. Therefore, we conceptualized as

autonomous motivation this type of motivation that was

inherently personal. The helping attitude reflected in the

autonomous motivation to disclose as a means for educa-

tion about HIV/AIDS can promote feelings of closeness

with others, which can be important for youth feeling

isolated because of their HIV status. Participants’ expla-

nations of motivations to disclose as a means to educate

others about HIV/AIDS relates to SDT-based research on

volunteering. Thoits (1994) suggested that people with

greater personal well-being tend to have more volition to

volunteer, such as those with positive personality attributes

(e.g., happiness, self-esteem, low depression). Addition-

ally, people with more social resources are more likely to

volunteer and this work in turn promotes further well-being

(Mellor et al. 2009). Weinstein and Ryan (2010) suggested

that autonomous motivation for helping provides benefits

for both helper and recipient because both experience

greater need satisfaction. Autonomous motives underlying

adolescents’ identity styles have been shown to positively

relate to commitment and personal well-being, whereas

controlled motives negatively relate to psychosocial

adjustment outcomes (Smits et al. 2010).

In an evaluation of the impact on HIV-positive people of

public disclosure of HIV status, Paxton (2002) found that

decreasing stigma and stopping new infections were

equally strong motivators to becoming community AIDS

educators. Participants reported that public disclosure led

to a diminution of discrimination, was extremely reward-

ing, and led to a less stressful, more productive life and

improved well-being. Paxton’s findings, combined with the

findings from this study, suggest a need for further research

on the benefits associated with autonomous motivation in

the context of public HIV disclosure. For example, Nate

and Sasha (and a couple of other program participants)

appeared to demonstrate indicators of well-being, such as

hope for the future and desire to improve their communi-

cation skills through formal education with the purpose of

educating others.

Implications

The findings from this study indicate implications for

policy and practice for people who work with and care for

youth living with HIV/AIDS. Specifically, practitioners can

utilize these findings to gain understanding of the lived

experiences of young people with HIV/AIDS that can

inform counseling and programming. Through under-

standing the issues related to self-determined motivation to

disclose status, practitioners can develop empathy and

sensitivity, and can better support clients as they explore

issues, develop goals, become empowered, and enact

decisions based on clarified personal values.

Given that autonomous motivation closely relates to

enhanced physical, emotional, and psychological well-

being in domains other than HIV disclosure, practitioners

should work with clients to identify potential positive

social and emotional benefits of disclosure, such as by

learning about others’ positive experiences. Of course, it is

imperative to compassionately respect the type of moti-

vation to disclose that individuals possess; disclosure can

be a life or death decision for some youth. Still, disclosure

can have numerous benefits outside of the self as well,

especially regarding the decrease and elimination of stigma

throughout communities. More research is needed about

the conditions, contexts, and situations that lead to auton-

omous motivation to disclose, and how to create these

conditions that support growth and well-being.

When parents (and peers) tell others without permission,

it breaks the security of attachment and brings into question

one’s sensitivity and responsiveness (LaGuardia et al.

2000). Emotional reliance (willingness to turn to others in

emotionally salient situations) is associated with greater

well-being and varies across different relationships, cul-

tural groups, and gender (Ryan et al. 2005). Given this,

counseling and support policies for families should make

explicit the potential negative consequences of disclosing

youths’ status.

We urge practitioners to carefully consider the

assumption that frequent and public disclosure is most

beneficial for people living with HIV/AIDS. This might

be true on a population-level. However, in this study,

680 J Child Fam Stud (2013) 22:672–683

123

individuals who were amotivated to disclose their status

seemed likely to experience harmful outcomes of pressured

disclosure such as loss of trust and self-esteem or loss of

significant personal relationships, and amotivation contin-

ued in a reinforcing cycle because of these concerns.

People living with HIV can have difficulty maintaining

close personal relationships because of stress associated

with the diseases and rejection from close ties (Brashers

et al. 2004). Youth with HIV/AIDS are wise to consider the

quality of the relationship before disclosing and make

‘‘educated guesses’’ about the potential trajectory of their

relationships (Poindexter and Shippy 2010).

People within the support systems of youth with HIV/

AIDS could increase their discussions of disclosure tech-

niques and planning. Supporting youth in developing a

healthy social identity could include discussions about

strategies to challenge stigmatizing attributions projected

onto people living with HIV/AIDS. Bakeera-Kitaka et al.

(2008) found that young people with HIV in their study

lacked specific behavioral skills, such as disclosure of HIV

status to their sexual partners, and this closely linked to

fear of rejection and stigma. Sturdevant et al. (2001) found

that without disclosure, less condom use was reported, even

controlling for the perception that the sexual partner was

infected. Garnering positive social support can be an

important life skill and create greater protective factors for

youth (Lam et al. 2007).

Limitations to this study exist. This study utilized a

broad distinction between three primary motivation types

rather than precise distinctions between the six types of

motivation in the SDT continuum. Additionally, this study

is limited in generalizability because of the small sample

size of nine participant interviews. However, the conver-

gence of data from participant observations and interviews

with staff members in conjunction with member checks

and other means to improve reliability and validity of the

qualitative adds rigor to the findings.

Future research is needed. More research should be

conducted to quantitatively measure the types of motiva-

tions to assess their prevalence in the context of HIV dis-

closure. Longitudinal studies should be conducted to

explore if and how self-determined motivation to disclose

changes over time. Research should be conducted with age

groups older and younger than adolescents aged 17–19 to

further establish operational constructs of SDT in the

context of HIV disclosure, such as experiences of auton-

omy, relatedness, and competence. Future research should

also include variables related to length of time that par-

ticipants have known their status, and the mode of trans-

mission (i.e., perinatal or behavioral).

This study extends SDT into the domain of HIV dis-

closure in older adolescents. SDT proposes that people are

at optimal functioning when they are engaging in activities

that are interesting and enlivening. Goffman (1963) sug-

gested that deciding to disclose a stigmatizing condition

can transform people from passive recipients of stigma into

an active agents in control of their own lives. This reso-

nates with the basic premise of SDT that ‘‘people are active

organisms, with evolved tendencies toward growing,

mastering ambient challenges, and integrating new expe-

riences into a coherent sense of self,’’ (SDT Overview,

www.psych.rochester.edu/SDT/theory.php). As Paxton

(2002) noted, there is a ‘‘paradox’’ in coming out openly as

an HIV positive person because ‘‘in facing monumental

fear and stigma, one is inevitably liberated from the

overwhelming burden of secrecy and shame, (p. 588).

Disclosure can be ultimately beneficial to all concerned

because it can enrich the disclosers’ lives and help their

communities increase in compassion and care for people

living with HIV/AIDS.

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• Older Adolescents’ Self-Determined Motivations to Disclose Their HIV Status

Abstract
Introduction
HIV Disclosure
Self-Determination Theory
Self-Determination Theory and HIV Disclosure
Method
Procedures and Participants
Data Analysis
Results
Amotivation
Controlled Motivation
Autonomous Motivation
Discussion
Implications
References

Should it be illegal for HIV-positive persons to have unprotected sex without disclosure? An

examination of attitudes among US men who have sex with men and the impact of state law

Keith J. Horvath*, Richard Weinmeyer and Simon Rosser

Division of Epidemiology and Community Health, University of Minnesota, 1300 South 2nd Street, Suite 300, Minneapolis,
MN 55403, USA

(Received 6 April 2009; final version received 1 February 2010)

The aims of this study were to describe the overall pattern and predictors of attitudes toward criminalizing
unprotected sex without disclosure by persons living with HIV among a broad sample of men who have sex with
men (MSM) living in the USA, and to examine whether attitudes and sexual risk behavior differ by states
with HIV-specific laws or no such laws. Participants (n�1725) were recruited in a 3.5 month period to complete
a cross-sectional 70-minute online survey assessing attitudes and high risk sexual behavior. Participants self-
identified as male, 18 years of age or older, a US resident, and having ever had sex with a man. In addition,
participants were coded as residing in a state with HIV-specific laws or not. Results showed that most (65%)

respondents believed it should be illegal for persons living with HIV to have unprotected sex without disclosure.
However, among the total sample and HIV-positive MSM, attitudes and unprotected sex with recent partners did
not vary by state law. Believing that it should not be illegal for persons living with HIV to have unprotected sex

without disclosure was associated with HIV-positive status (OR�0.33), higher education (ORs�0.42�0.64),
gay orientation (non-gay orientation: OR�1.54), perceptions that state residents were somewhat or very accepting
toward homosexuality (OR�0.75), unprotected anal intercourse with two or more recent sexual partners (OR�
0.72), and lower perceptions of responsibility (OR�0.75). The results did not support the proposition that HIV-
specific laws deter high-risk sexual behavior, however further research is needed to examine whether they act as
a barrier for MSM at highest risk for acquiring or transmitting HIV.

Keywords: HIV; law; sexual risk behavior; men who have sex with men

Introduction

Despite the adoption of a rights-based approach by
several notable global HIV/AIDS organizations
(UNAIDS, 2008; World Health Organization, 2008),
at least 30 persons have been prosecuted for HIV
exposure in the USA since 2008 (The Center for HIV
Law and Policy, 2009). Penalties range from a US$100
fine to up to 30 years of imprisonment (Global
Network of People Living with HIV, 2009). Although
the degree to which HIV-specific laws undermine or
support national HIV prevention efforts continues to
be debated (Burris & Cameron, 2008; Galletly &
Pinkerton, 2006; Lowbury & Kinghorn, 2006; Weait,
2007), there is a continuing need to understand the
attitudes that persons from groups disproportionately
affected by the HIV epidemic hold about such laws,
and how HIV-specific laws affect sexual behavior
(UNAIDS, 2008).

Assessing the impact of HIV-specific laws in the
USA is complex as laws vary across states on several
dimensions, including whether one has knowledge of
his or her HIV status, whether or not HIV status
disclosure occurred, or if there was a clear intent to

transmit HIV. To examine whether HIV-specific laws,

and knowledge of such laws, influenced condom use,

Burris, Beletsky, Burleson, Case, and Lazzarini (2007)

interviewed 482 men and women living in a state that

either has a HIV-specific law requiring disclosure of

HIV status by infected individuals (Illinois) or a state

that has no such law (New York). Approximately

45% (n�219/482) of respondents believed the law
prohibited HIV-positive individuals from having sex

without using a condom. With respect to anal sex,

neither living in a state with a HIV-specific law

nor having knowledge of the law was significantly

associated with increased condom use. However,

participants living in Illinois who disclosed their HIV

status were less likely to use condoms, while New York

residents who disclosed were more likely to use a

condom. An online study of men who have sex with

men (MSM) in the UK showed that over half (57%) of

participants believed it ‘‘is a good idea to imprison

people who know they have HIV if they pass it to

sexual partners who do not know they have it,’’ with

25% being unsure, and 18% opposed (Dodds, 2008;

Dodds et al., 2009). Men who had never been tested for

*Corresponding author. Email: horva018@umn.edu

AIDS Care
Vol. 22, No. 10, October 2010, 1221�1228

ISSN 0954-0121 print/ISSN 1360-0451 online

# 2010 Taylor & Francis

DOI: 10.1080/09540121003668078

http://www.informaworld.com

http://www.informaworld.com

HIV in this study were more likely to support

imprisonment than those who had tested negative for

HIV or who self-reported as HIV-positive, while HIV-

positive participants tended to believe that responsi-

bility for negotiating sexual exchanges rested with

both partners. Overall, these and other (e.g., Adam,

Elliott, Husbands, Murray, & Maxwell, 2008) studies

suggest variation in knowledge of and attitudes toward

laws that criminalize unprotected sex among persons

living with HIV.
MSM remain the largest population infected with

HIV in the USA and similar countries (Centers for

Disease Control and Prevention, 2008; Sullivan et al.,

2009). Studies are lacking that examine the attitudes of

MSM living in the USA toward laws that prohibit

unprotected sex by HIV-positive individuals without

disclosure. Therefore, the aims of this study were to:

(1) describe overall attitudes toward criminalizing

unprotected sex without disclosure by persons living

with HIV among a broad sample of MSM living in the

USA; (2) examine whether attitudes and sexual risk

behavior differ by states that either have HIV-specific

laws or no such laws; and (3) determine the demo-

graphic, psychosocial, and behavioral predictors of

attitudes toward criminalizing unprotected sex with-

out disclosure by HIV-positive persons. The results

have implications for policy-makers regarding crim-

inal laws surrounding HIV transmission, as well as for

prevention efforts aimed to reduce rates of HIV

infection in the USA.

Method

Recruitment and enrollment

Recruitment was guided a priori by the degree to

which legal and HIV experts believed that state laws

were generally favorable or unfavorable to gay,

lesbian, bisexual, and transgender (GLBT) residents

living in US population centers, and matched on

population size and the number of alcohol establish-

ments catering to the GLBT community. Participants

were recruited in a 3.5 month period in 2008 using

online banner advertisements placed on two websites

popular among gay and bisexual men to meet sexual

partners, and targeted toward men living in the

selected population centers. Banner ads stated, ‘‘Par-

ticipate in University Research on Sex and Alcohol

and Earn $30’’, included the university and study logo,

and a picture of a man. Participants must have self-

identified as male, been 18 years of age or older, and

have ever had sex with a man to be eligible for

the study. Of the men who clicked on the banner ad

(n�3370), 56% (n�1874) met eligibility requirements

and enrolled in the survey, and 92% (n�1725) of these
men completed the survey.

Procedures

All procedures were approved by the University of
Minnesota Institutional Review Board and a federal
Certificate of Confidentiality was obtained to guard
against the subpoena of participant data. Participants
who clicked on the study banner advertisement were
taken to a secure study website. Prospective partici-
pants viewed a welcome page with an overview of
procedures and information about the study and staff.
After answering eligibility questions, eligible respon-
dents were guided through a series of consent pages
(Rosser, Gurak, et al., 2009). An email was sent to
participants with a link to the survey for re-entry if
they chose to discontinue before completion. Partici-
pants who started the survey without finishing were
sent reminders. The mean completion time was
approximately 70 minutes. Automated and manual
de-duplication and validation protocols were applied
to ensure that each case represented a unique respon-
dent. Ineligible persons viewed a web page that
thanked them for their interest.

Measures

Items used for the purpose of this study were taken
from a larger online survey of online and offline sexual
attitudes and behaviors, substance use, and laws
relevant to the GLBT community. Using algorithms,
participants were asked a variable number of items
depending on their responses. Participants responded
to each relevant question with either their answer or by
clicking a ‘‘refuse to answer’’ option.

The main outcome variable of interest was:
‘‘should it be illegal for an HIV-positive person who
knows his or her status to have unprotected sex
without telling the other person of their HIV-status?’’
Response options were: ‘‘no, it shouldn’t be illegal,’’
‘‘I don’t know,’’ or ‘‘Yes, it should be illegal.’’

Demographic factors (see Table 1) included age
(open-ended format), HIV-status (calculated from two
questions of when they had their last HIV test and
whether they have ever been diagnosed with HIV),
ethnicity (Hispanic versus non-Hispanic) and race
(check box for American Indian, Asian American,
Black, Pacific Islander, White, or an open-ended text
box for ‘‘other’’ race), and educational attainment.
Participants self-reported their sexual identity (gay,
bisexual, heterosexual, or a different sexual identity),
as well as their comfort with their sexual orientation
(Likert scale from 1�Very Comfortable to 5�Very
Uncomfortable). Men were asked to report the poli-
tical party for which they tend to vote, and how gay

1222 K.J. Horvath et al.

Table 1. Sample sociodemographics.

Should it be illegal for an HIV-positive person who knows his or her
status to have unprotected anal sex without telling the other person of

their HIV-status?
a

Total

(n�1725)
No

(n�393)
Don’t Know

(n�213)
Yes

(n�1116)

Column (%) Row (%) Row (%) Row (%) Chi-square value

Age 47.28***
18�20 7 11 10 79
21�30 41 18 11 71
31�40 24 28 12 61
41�70 28 28 16 56

HIV-status 112.21***
Negative 77 18 12 70

Positive 14 48 14 38
Never tested 9 20 11 69

Ethnicity/race 0.65

White 76 23 12 65
Hispanic 15 21 13 65
All other 8 22 12 66

Education 20.03**
H.S. or less 11 17 8 75
Technical/some college 37 21 12 67
College degree 34 25 14 62

Grad degree 18 27 15 58
Sexual identity 15.44***
Gay 86 24 13 63

Other (e.g., Bisexual) 14 17 7 76
Comfort with sexual orientation 14.80**
Very 60 25 13 62

Comfortable 25 19 14 67
Less than comfortable 15 19 9 72

Political affiliation 12.40
Democrat 74 24 13 63

Republican 11 18 8 74
Independent 6 19 12 70
Don’t/can’t vote 7 19 10 70

Other 2 23 15 63
Accepting state 10.68*
Very/somewhat hostile 27 20 10 70

Neither 15 21 15 65
Somewhat/very accepting 58 25 13 62

Long-term relationship 5.26

No 71 21 13 66
Yes 29 26 12 62

UAI (past three months) 48.08***
0 63 19 12 69

1 13 20 14 66
2� 23 35 13 52

M (SD) M (SD) M (SD) M (SD)

Responsibility
b

16.96
c
***

1�SA to 7�SD 1.81 (1.27) 2.31 (1.50) 1.90 (1.19) 1.61 (1.14)

a
Three participants refused to answer the question.

b
Defined as: ‘‘I feel responsible for protecting my online sexual partners from HIV or other sexually transmitted diseases’’ (Likert scale from

1�Strongly agree to 7�Strongly disagree).

c
One-way ANOVA.

*pB0.05; **pB0.01; ***pB0.001.

AIDS Care 1223

accepting or gay hostile they believe people are in their
state (Likert scale from 1�Very Hostile to 5�Very
Accepting).

Participants reported separately the number of
sexual partners they met online, in a bar, and at any
other venue with whom they engaged in unprotected
anal intercourse (UAI) in the past three months,
which then was used to calculate the total number of
UAI partners. In addition, men were asked if they were
in a long-term relationship and, for those men who
were, whether they had engaged in UAI in the past
three months with that partner. Finally, men were
asked to state the degree to which they agreed with the
following statement, ‘‘I feel responsible for protecting
my online sexual partners from HIV or other sexually
transmitted diseases (STDs)’’ (Likert scale from 1�
Strongly Agree to 7�Strongly Disagree).

Analyses

Statistical analyses were performed using STATA 9.2.
A variable was created reflecting whether participants
resided in a state with HIV-specific laws (or laws that
increase penalty based on HIV status) or no HIV-
specific law from on an existing database (American
Civil Liberties Union, 2008). Demographic, psycho-
social, and behavioral group differences were exam-
ined with chi-square and Fisher’s exact tests. Factors
significantly associated with the main outcome in the
bivariate analyses were entered into a multivariate
ordinal logistic regression to examine which factors
were significantly associated with believing it should
be illegal for an HIV-positive person who knows his or
her status to have unprotected sex without telling the
other person of their HIV-status. The proportional
odds assumption was met for all predictor variables.
Statistical significance was set a priori at pB0.05.

Results

Sample characteristics

Sample characteristics of respondents are shown in
Table 1. Sixty-five percent of participants were be-
tween the ages of 21 and 40, 76% identified as white,
and 52% obtained a college degree. While 77% (n�
1319) of participants reported that their most recent
HIV test was HIV-negative, 14% (n�241) reported
being HIV-positive, and 9% (n�149) had never been
tested. Of note, 34% of MSM between the ages of 18
and 21 had never been tested, compared to between 6
and 8% of men in the other age categories (not shown,
x2[3, N�1707]�214.66, pB0.001). A minority of
participants (29%) was in a long-term relationship
and most participants (63%) reported no acts of UAI

in the past three months with men they met online,
in a bar, or at other venues in the past three months.

Attitudes toward unprotected sex by HIV-positive
individuals without disclosure

Sixty-five percent of respondents believed that it
should it be illegal for an HIV-positive person who
knows his or her status to have unprotected sex
without telling the other person of their HIV-status,
23% believed that it should not be illegal, and 12%
did not know. Believing that it should be illegal for an
HIV-positive person who knows his or her status to
have unprotected sex without telling the other person
of their HIV-status was associated with younger age,
HIV-negative or unknown status, less education,
non-gay sexual identification, being less comfortable
with their sexual orientation, residing in a state in
which they perceived residents were somewhat or very
hostile, engaging in two or more acts of UAI in the
past three months, and feeling more responsible for
protecting online sexual partners from HIV and other
STDs (see Table 1).

State law, attitude, and sexual risk behavior

Table 2 shows the frequency and percentage of the
overall sample and of HIV-positive MSM who
endorsed the main outcome variable, UAI partners
in the past three months, and UAI with a long-term
partner by whether state-level criminal statutes on
HIV transmission existed or not. For the overall
sample and HIV-positive MSM, attitudes did not
vary according to the existence of criminal statutes on
HIV transmission. Likewise, the percentage of parti-
cipants reporting no, one, or two or more UAI
partners or UAI with a long-term partner in the
past three months did not differ by state law.

Multivariate analysis of predictors of believing that
unprotected sex by HIV-positive individuals without
disclosure should be illegal

Results of the multivariate analysis are shown in
Table 3. Participants who were HIV-positive (versus
HIV-negative/unknown; OR�0.33) and held a col-
lege or graduate degree (versus less education; ORs�
0.42�0.64) were less likely to believe that it should be
illegal for an HIV-positive person who knows his or
her status to have unprotected sex without telling the
other person of their HIV-status. Conversely, men
who had a non-gay sexual orientation were more
likely than men with a gay orientation to believe it
should be illegal (OR�1.54). Compared to men who
perceived people in their state to be somewhat or very
hostile toward homosexuality, those who rated their

1224 K.J. Horvath et al.

state residents to be somewhat or very accepting were
less likely to believe it should be illegal (OR�0.75).
With respect to sexual behavior, the odds of believing
it should be illegal was significantly less for men who
reported engaging in UAI with two or more sexual
partners in the past three months (OR�0.72) com-
pared to men who self-reported having no UAI
partners. Finally, feeling less responsible for protect-
ing online sexual partners from HIV or other STDs
was associated with decreased odds for believing that
it should be illegal (OR�0.75).

Discussion

Most men in this study believed it should be illegal for
an HIV-positive person who knows his or her status to
have unprotected sex without disclosing it to their sex
partners. Believing that it should be illegal was
associated with HIV-negative or unknown status, less
education, having a non-gay sexual orientation, living
in a state that they perceive as hostile toward GLBT
persons, reporting fewer UAI partners in the past 3
months, and feel greater responsibility toward protect-
ing their online partners from HIV and other STDs.
Similar to prior studies (Burris et al., 2007), residing in
a state with existing statutes on HIV transmission was
not associated with differences in attitudes about the
main outcome variable or with decreased sexual risk
behaviors in this sample of MSM.

Attitudes varied markedly by HIV status.
Although nearly half of MSM living with HIV believed
it should not be illegal, most HIV-negative partici-
pants and those who had never been tested for HIV
were in support. Prior studies show that HIV-negative
individuals living in the UK overall were critical of
laws that criminalize the transmission of HIV (Dodds
& Keogh, 2006). These differences most likely reflect
a shift in orientation toward criminal statutes on HIV
transmission following seroconversion. Specifically,
those who know or believe they are HIV-negative are
primarily concerned with protecting themselves from
HIV and support the implementation of laws that
would appear to reduce their risk of encountering an
HIV-positive sexual partner who fails to explicitly
disclose his status. Following seroconversion, HIV-
positive individuals are likely to fear the potential for
such laws to be used to prosecute them for cases that
involve their HIV status.

Although age was insignificant in the multivariate
model, the finding that fewer older MSM believed that
it should be illegal for someone who is HIV-positive to
have unprotected sex without disclosure than younger
MSM may be, in part, attributed to the high propor-
tion (34%) of 18�20 year old MSM who had never
been tested for HIV. As noted by others (Dodds et al.,

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AIDS Care 1225

2009; Galletly & Pinkerton, 2006), MSM who have not

been tested for HIV may adopt a HIV disclosure-based

risk reduction strategy (i.e., one that relies on the

disclosure by the HIV-positive partner) that gains

credibility by HIV transmission laws. Sexual ex-

changes are complex and often rely on non-verbal

cues to inform safer sex practices (Adam, Husbands,

Murray, & Maxwell, 2008; Horvath, Nygaard, &

Rosser, in press; Horvath, Oakes, & Rosser, 2008).

Evidence suggests an increasing shift toward non-

disclosure in the MSM community (Sheon & Crosby,

2004) and, therefore, relying on a disclosure-based risk

reduction strategy appears inherently precarious.
The recent sexual risk behavior of MSM in this

study was similar to that of other online studies using

similar methodology. Thirty-seven percent of MSM in

the current study reported one or more UAI partners

in the past three months, compared to 31% of MSM

in a prior study (Rosser, Oakes, et al., 2009). Men who

had more UAI partners and endorsed lower responsi-

bility to protect their online sexual partners from HIV

and other STDs were less likely to believe that it should

be illegal for someone who has HIV to have unpro-

tected sex without disclosure. Prior studies show that

greater personal beliefs in responsibility for protecting

partners from HIV and other infections is associated

with decreased transmission risk (O’Leary & Wolitski,

2009). However, as noted above, no significant asso-

ciation was found between the existence of state

statutes on HIV transmission and UAI partnerships

among the total sample or specifically among HIV-

positive MSM. Overall, these results suggest that

state laws on HIV transmission are not a deterrent to

sexual risk taking among MSM, and that prevention

Table 3. Multivariate analysis for believing that it should be illegal for HIV-positive person to have unprotected sex without

disclosure.
a

Odds ratio Lower Limit Upper Limit p-value

Age
18�20 Ref.
21�30 0.80 0.48 1.32 0.379
31�40 0.62 0.37 1.05 0.074
41�70 0.61 0.36 1.03 0.065

HIV-status
Negative Ref.
Positive 0.33 0.24 0.44 0.000

Never tested 1.72 0.48 1.08 0.112
Education

H.S. or less Ref.
Technical/some college 0.64 0.44 0.95 0.028

College degree 0.53 0.35 0.78 0.002
Grad degree 0.42 0.27 0.64 0.000

Sexual identity

Gay Ref.
Other 1.54 1.08 2.20 0.018

Comfort with sexual orientation

Very Ref.
Comfortable 1.11 0.86 1.42 0.419
Less than comfortable 1.21 0.87 1.70 0.254

Accepting state

Very/somewhat hostile Ref.
Neither 0.84 0.60 1.18 0.316
Somewhat/very accepting 0.75 0.59 0.96 0.023

UAI (past three months)
0 Ref.
1 1.00 0.73 1.37 0.997

2� 0.72 0.56 0.93 0.013
Responsibility

b
0.75 0.69 0.81 0.000

a
Defined as ‘‘Should it be illegal for an HIV-positive person who knows his or her status to have unprotected anal sex without telling the other

person of their HIV-status?’’ (Response options: 0�No, 1�Don’t know, 2�Yes).
b
Defined as: ‘‘I feel responsible for protecting my online sexual partners from HIV or other sexually transmitted diseases’’ (Likert scale from

1�Strongly agree to 7�Strongly disagree).

1226 K.J. Horvath et al.

resources may be more effective if allocated toward
addressing empirically supported individual risk fac-
tors (e.g., increasing personal responsibility beliefs).

Study limitations

The results of this study are limited in several
ways. First, the cross-sectional design prohibits causal
inferences about the impact of independent variables
on outcomes. In addition, we cannot determine
whether the non-significant association between state
law and UAI partnerships is attributable to a lack of
awareness of the existence of such laws or whether such
information is simply not used in MSM’s sexual
decision-making. Participant knowledge of the exis-
tence of HIV-specific state laws should be considered
in future research. Second, while a strength of the study
was that participants were geographically diverse, the
findings may not generalize to non-Internet-using
MSM. Moreover, participants were not randomly
selected and, therefore, the extent to which they
represent MSM is unknown. Finally, although pre-
cautions were taken to detect and eliminate deception,
the study relied on self-reported data that may be
prone to error.

Implications

Law has been used to address a number of public
health domains (Moulton et al., 2008), including HIV
(Gable, Gostin, & Hodge, 2009). However, a number
of experts have rejected the establishment of HIV-
specific criminal statutes as means to deter HIV
transmission (Burris & Cameron, 2008; Burris,
Cameron, & Clayton, 2008; Galletly & Pinkerton,
2006; Lowbury & Kinghorn, 2006; Weait, 2007). The
results of this study support these claims, as we found
no evidence that states with and without such laws
differed in HIV risk behavior reported by HIV-positive
MSM or MSM in general. Even if the existence of such
laws deters a small number of HIV-positive persons
from engaging in high risk behavior, there is rising
concern about the proper enforcement of such laws. A
review of cases involving convictions or prosecutions
of HIV-positive persons in England from 2005 to 2008
revealed improper enforcement by police of HIV-
specific laws as a result of misunderstandings of such
laws, a poor understanding of the complexities of HIV
transmission, and what actually constitutes scientific
evidence in such cases (Terrence-Higgins Trust, 2009).
In conclusion, the results of this and other (Burris
et al., 2007) studies fail to provide evidence that
criminalization is an effective deterrent to engaging
in high risk sexual behavior, while more investigation
into the full range of possible effects of such laws is
needed.

Acknowledgements

This study was undertaken as part of the ‘‘Structural

Interventions to Lower Alcohol-related STI/HIV,’’ grant

number R01AA01627001, funded by the US National

Institute on Alcohol Abuse and Alcoholism (NIAAA).

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Copyright of AIDS Care is the property of Routledge and its content may not be copied or emailed to multiple

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

download, or email articles for individual use.

By Amy D.
Leonard, Christine

M. Markham,
Thanh Bui,

Ross Shegog and
Mary E. Paul

Amy D. Leonard is a
research coordinator,
and Mary E. Paul is

associate professor,
both in the Depart-
ment of Allergy and
Immunology, Texas
Children’s Hospital,

Baylor College of
Medicine, Houston.

Christine M.
Markham and Ross

Shegog are assistant
professors, and Thanh

Bui is a doctoral stu-
dent, all at the Center

for Health Promo-
tion and Prevention

Research, School
of Public Health,

University of Texas
Health Science Center

at Houston.

110 Perspectives on Sexual and Reproductive Health

Lowering the Risk of Secondary HIV Transmission: Insights
From HIV-Positive Youth and Health Care Providers

CONTEXT: Both perinatally and behaviorally infected HIV-positive youth engage in sexually risky behaviors, and a
better understanding of the perceptions of these youth and of health care providers regarding disclosure of HIV status
and risk reduction would aid in the development of behavioral interventions for such youth.

METHODS: In spring 2007, some 20 HIV-positive inner-city youth (aged 13–24) and 15 health care providers who
work with HIV-infected youth participated in in-depth, semistructured interviews. Youth were recruited at an HIV
clinic, AIDS clinics and an AIDS service organization, and had received care from participating

providers.

Detailed
contextual and thematic discourse analysis was performed on interview transcriptions.

RESULTS: Eighteen of the 20 youth had disclosed their HIV status to another individual at least once. Eleven reported
being sexually active, and three of these had been perinatally infected. Qualitative analysis revealed four subthemes
related to disclosure: stigma and emotions, trust issues, reasons for disclosing and strategies for addressing disclo-
sure. Five subthemes were identifi ed related to sexual risk reduction: dating challenges, attitudes toward condom use,
self-effi cacy for condom use negotiation, pregnancy attitudes and sexual risk reduction strategies. Providers reported
that access to more engaging and interactive educational tools within the clinic setting could enhance their risk
reduction counseling with HIV-positive youth.

CONCLUSIONS: HIV-positive youth experience multiple challenges regarding disclosure and sexual risk reduction,
and health care providers need innovative tools that can be used in clinic settings to improve adolescents’ skills in
reducing risky sexual behavior.

Perspectives on Sexual and Reproductive Health, 2010, 42(2):110–116, doi: 10.1363/4211010

Improvements in the medical management of HIV have
reduced the rate of perinatal transmission from mothers
to their children, and 91% of U.S. children with perina-
tally acquired HIV survive into adolescence and young
adulthood.1 Nevertheless, youth continue to acquire HIV
through risky behaviors such as unprotected sex and
injection-drug use. The Centers for Disease Control and
Prevention (CDC) estimates that at least half of all new HIV
infections in the United States are among people younger
than 25 and are largely due to these two risk behaviors.1
The extended survival of perinatally infected youth, com-
bined with rising numbers of behaviorally infected youth,
presents health care providers with the critical challenge of
providing HIV-positive youth with information and meth-
ods to prevent secondary HIV transmission.

Successes in HIV medical management have not been
matched by successes in behavioral interventions to cur-
tail risky behaviors among HIV-positive youth. Despite
researchers’ advanced understanding of the pathophysiol-
ogy and transmission of HIV, as well as the use of clinic-
based education relating to risk reduction, the translation
of relevant health messages into behavioral practice remains
fl awed, as HIV-positive youth continue to engage in risky
behaviors.2–6 In one study, 43% of HIV-positive youth
reported not using a condom at last intercourse.2 A small

number of behavioral interventions for HIV-positive youth
have been rigorously evaluated, but the assessment of their
effectiveness has been hampered by poor attendance.5,7,8

To fully understand the challenges of preventing sec-
ondary HIV transmission among youth, the experiences of
both HIV-positive youth and health care providers need to
be explored. Although quantitative studies9–11 have exam-
ined the attitudes and perceptions of such youth toward
sexual risk reduction and disclosure of their HIV status,
qualitative data to inform the development of interventions
have been limited.12,13 Furthermore, little is known about
providers’ attitudes toward risk reduction and

disclosure

among HIV-positive youth.14 The present study explores
the views of health care providers and HIV-positive youth
about disclosure and sexual risk reduction, and suggests
how prevention efforts and clinical behavioral interven-
tions might be strengthened.

METHODS
This study was conducted in spring 2007 as a forma-
tive component for the development and evaluation of
a computer-based clinical intervention for HIV-positive
youth. Purposive sampling was used to recruit youth
participants at a pediatric HIV clinic, AIDS clinics and a
local AIDS service organization. Case managers referred

Volume 42, Number 2, June 2010 111

potential participants to the study coordinator. To be eli-
gible, participants had to be HIV-positive and aged 13–24
(the age-group defi ned as adolescents by the CDC15). Prior
to the interview, informed consent was obtained from par-
ents and adolescents. For participants who were younger
than 18 and not emancipated, their assent and consent
from one parent were obtained. Youth completed a survey
that assessed gender, age, race or ethnicity, HIV status and
mode of infection. Health care providers were recruited by
personal contact; to be eligible, providers had to have more
than a year of pediatric HIV-positive care experience.

In-depth interviews were conducted with the youth at
the clinic or agency from which they were recruited, and
with the providers in private offi ces at their hospital or
clinic. All interviews were recorded and transcribed ver-
batim; each interview lasted approximately one hour, and
the youth received a $10 gift certifi cate at its completion.
The interviews followed a semistructured format with
open-ended probes, and focused on the two principal
themes of interest: disclosure of HIV status and sexual risk
reduction. The interview guide was developed by a panel
consisting of a pediatric HIV specialist, a health educa-
tor experienced with HIV-positive youth and behavioral
scientists experienced in adolescent HIV prevention. To
enhance rapport with the youth, interviewers progressed
from less sensitive to more sensitive topics. Regardless of
personal experiences, respondents were asked to report
any thoughts or opinions they had about HIV disclosure
or sexual risk reduction.

Detailed contextual and thematic discourse analysis
was performed with the aid of ATLAS.ti, version 5.2.20,
software. Transcriptions were entered into the computer
program, and the text was analyzed using constant com-
parative and thematic analysis. For each transcription,
at least two investigators independently performed the
coding and categorized codes into themes and sub-
themes, which were then compared and contrasted
for interrater reliability. Results of youth and provider
groups were compared to evaluate trends that emerged
from the data.

RESULTS
Thirty-fi ve interviews were conducted: 20 with HIV-
positive youth (fi ve males, 15 females)* and 15 with health
care providers. Twelve youth (four males, eight females)
had been infected perinatally, and eight (one male, seven
females) behaviorally. Participants were 17 years old, on
average; 16 identifi ed themselves as black, three as Latino
and one as white. The provider sample consisted of three
pediatricians, two obstetrician-gynecologists, three nurse
practitioners, one nurse and six social workers. Although
it was not an inclusion criterion, all youth participants had
received medical care from the health care providers tak-
ing part in this research.

Eighteen of the 20 youth had disclosed their HIV status
to another individual at least once, though not necessarily
to a sexual partner. Of the 11 who reported being sexually

active, three had been perinatally infected. Responses from
both youth and health care providers revealed a number
of common subthemes regarding the principal themes of
disclosure and sexual risk reduction.

Disclosure
�Stigma and emotions. When asked “What is the most
diffi cult thing about living with HIV?” more than a third of
the youth responded that it was not being able to disclose
their status. A 19-year-old behaviorally infected black
male stated that the biggest burden related to HIV was
“keeping it a secret, because the people I hang around talk
about [HIV] a lot.” Some youth said keeping their HIV
status a secret was a barrier to obtaining the emotional
support they desperately desired. Expressing the feelings
of several youth, one adolescent commented:

“I was so scared. I was like, worried, and I was kind of
nervous. I didn’t know what to say, how exactly to say it
and how to put it. … I got mixed feelings that day [I dis-
closed]. I swear I thought I was sick. I was just, like, oh my
God.”—18-year-old perinatally infected Hispanic female

Health care providers also believed that nondisclosure
was the most diffi cult thing for youth living with HIV.
Providers noted that many youth associated nondisclosure
with societal stigma. A pediatrician explained:

“Because of stigma, they don’t get much community
support like other chronic diseases. [HIV is] not like
cancer, [where] at the convenience store there’s a picture
of the child and they’re collecting donations.”

In addition, some providers attributed nondisclosure to
an adolescent’s acceptance or internalizing of the disease.
As one pediatrician stated, “I think it becomes really
diffi cult for many of them to adjust to that transition of
‘I’m a teen, I am HIV-positive,’ and that whole societal
piece of the [stigma].”

Both youth and providers said that fear of a negative
reaction prevented youth from disclosing their HIV sta-
tus. One 15-year-old perinatally infected black female
recalled hearing, “Oh, don’t touch this person, because
you are going to have AIDS,” or “Don’t touch that,
because you’re going to catch AIDS and die.” Trepidation
over possible gossip or rejection was cited by the major-
ity of youth and providers as barriers to disclosure. One
pediatrician reported, “There’s that question of, ‘If I tell
him now, will he leave?’ And for [youth] who’ve tried,
they have found that that is exactly what happened.”
Another 15-year-old perinatally infected black female
explained her fear of gossip: “Because people are [stu-
pid]. They talk too much. … Like, if I tell my friend, my
friend goes to tell her friend, and she tells her friends,
[and] it gets around.”

*The gender distribution of our sample refl ects that of HIV-infected indi-

viduals of this age in the local study area (source: Houston Department

of Health and Human Services, Bureau of Epidemiology, AIDS: summary

of Houston/Harris County cases, 2009,

health/HIV-STD/1stQRT2009 >, accessed July 29, 2009).

Lowering Secondary HIV Transmission Among HIV-Positive Youth

112 Perspectives on Sexual and Reproductive Health

•Trust issues. Health care providers reported emphasizing
trust issues when discussing disclosure with their patients.
A nurse practitioner explained:

“They really have to feel like they trust the person with
that information. … But I advise them not to tell some-
body that might turn around and try to hurt them, …
because it’s a big piece of information to give anybody.”

Youth also emphasized the importance of trusting a
person before disclosing, but “trust” emerged as a vague,
undefi ned concept. Only one youth offered a defi nition:
“loyalty, respect and honor.” The majority appeared unsure
about how to handle disclosure, even with someone they
knew they “could trust.” A few participants described
methods of gauging a person’s reaction before they dis-
closed their status. For example, one youth explained:

“First I would ask them, ‘Well, what do you think about
HIV?’ … If they tell me, ‘Oh, I don’t like to hang out with
[HIV-positive] people and everything,’ I just stay back.
And I’m like, ‘Oh, I’m not going to tell them.’ If they give
me another [answer], like ‘Oh, no matter if somebody has
that; I’ll be his friend,’ or ‘I’ll be there for him,’ I’ll be like,
‘Oh. Well, I have HIV.’”—16-year-old behaviorally infected
Hispanic female
�Disclosure reasons. Fourteen of the 18 youth who had
disclosed their HIV status said they desired a closer rela-
tionship with another person, and described their postdis-
closure relationship as more open than before. All

providers

reported spending time with their adolescent patients
discussing the pros and cons of disclosure. Providers’
responses revealed that they encouraged disclosure so that
the youth would have someone to talk with to lessen their
isolation, would have someone to assist with medication
reminders and would ensure that their potential sexual
partners were aware of the importance of using condoms.

When asked to describe a disclosure incident, eight youth
described disclosure to a friend, six to a signifi cant other
and four to a family member. All youth who had disclosed
their HIV status reported at least one compassionate reac-
tion. Half agreed that this supportive experience encouraged
them to consider future disclosure. Only two participants
recounted a negative reaction to their disclosure, including
a 19-year-old behaviorally infected black female, who said:
“He told me he loved me so much, he wanted to marry me.
Then I told him [my HIV status]. He walked away. [Now],
he just treats me like an outsider.” These two participants
said the negative reactions would not prevent them from
disclosing again, but they would be more selective in whom
they would tell.

Other youth described the medical and emotional ben-
efi ts of disclosure. For example:

“Now [my friend] protects me. She’s like my guard. …
She tries to keep me from certain things. Like when she
knows someone’s sick, she’s like, ‘Don’t go by them.’ …
She’s like another person that tells me to take my medi-
cine.”—14-year-old perinatally infected black female

Some youth indicated that another reason to disclose
was to warn others of the risk of infection:

“If they’re doing stuff that I don’t think is smart or put-
ting themselves in danger, then I’ll tell them, make them
realize that it’s not just a certain population [who get
infected], … that it can happen to anyone.”—19-year-old
perinatally infected white female
�Disclosure strategies. Health care providers identifi ed
various strategies to help HIV-positive adolescents address
disclosure issues. One social worker described the use of
role-play:

“We write … down who they’d like to disclose to and
why. … We [ask] who would be the hardest, the easiest,
and the pros and cons of what will happen if they don’t
want to talk to them again.”

A pediatrician stated:
“I have a handout that … tells [patients] to be very care-

ful who they disclose to, talks to them about only telling
people you trust, being very careful about telling people
you think are your best friends, because you don’t know
how people are going to respond to this information.”

In addition, videos in which HIV-positive peers address
disclosure issues were cited as a helpful resource. Another
strategy was to offer the clinic as the location for disclo-
sure. As one pediatrician told an HIV-positive patient,
“Anything we can do to be here for you if you want to tell
him here, then we can back it up right away with some
information.”

Sexual Risk Reduction
�Dating challenges. The term “dating” was not defi ned for
the youth, but their responses indicated that they consid-
ered dating to mean going out regularly with someone as a
romantic partner. Of the 18 youth who reported a disclo-
sure incident, nine said they disclosed to a dating partner,
and four stated that disclosure was a dating challenge.
Twelve of the 15 respondents who answered the question
about whether their HIV status prevented them from dat-
ing did not feel that it did. Nine of the 17 who responded
to the question about whether being HIV-positive infl u-
enced their intimacy with another person (e.g., made them
restrict themselves to holding hands or kissing) said that it
did not. One 14-year-old perinatally infected black female
reported, “I’m only going to kiss or hold hands, but none
of the other stuff, … like tongue kiss, because I’d be scared
for him and myself.” Health care providers said disclosure
was the main dating challenge for HIV-positive youth. As
one social worker commented, “Their relationships often
don’t last long, so next week [their] boyfriend is dating
someone else and sharing their secret around.”

Nine out of 14 youth who commented on the issue felt
that an HIV-negative partner would have trouble relating
to their circumstances and that there would be diffi cul-
ties with physical as well as emotional intimacy. Regarding
physical closeness, one youth explained:

“[With an] HIV-negative guy, it’s more diffi cult. …
’Cause after a while you get more intimate with the per-
son, and you think about it, and you know you can’t do
that or this will happen. But you love this person, you

Volume 42, Number 2, June 2010 113

care for this person, but you don’t want to pass this thing
along.”–18-year-old perinatally infected black female

Upon being questioned about dating an HIV-positive
individual, 10 out of 14 youth said that an HIV-concordant
relationship would be easier. Only a couple of participants
reported fear of reinfection or a partner’s illness as a deter-
rent for dating another HIV-positive person. A few others
said that dating an HIV-positive individual would provide
commonality with their partner, greater confi dence in the
relationship and assistance with their antiretroviral medi-
cation schedule. One participant stated:

“[It would be] better, because y’all both have to take
medicine. … So if you see that person taking the medi-
cine, you’re going to remember to take your medicine.
And you can talk to that person instead of, like, I’m scared
to say this or say that.”—15-year-old perinatally infected
black female
�Attitudes toward condom use. Discussion related to
condoms focused on attitudes toward sex with an HIV-
negative individual versus sex with someone who was
HIV-positive. Of the 16 youth who responded, half felt it
was acceptable to have sex with an HIV-negative partner if
a condom was used. As an 18-year-old behaviorally
infected black female remarked, “I feel that the person that
has HIV should automatically tell the person he’ll need to
wear a condom because, you know, they should have feel-
ings about the other person. If he refuses, then it just won’t
happen.”

Twelve of the 16 youth did not condone having unpro-
tected sex with an HIV-negative partner. As a 15-year-old
perinatally infected black female exclaimed, “Oh, that’s not
good. … If you know you have it, you shouldn’t do that
because you don’t want to have to pass it on to anybody
else and make them have it.” However, four felt it was
acceptable to have unprotected sex with an HIV-negative
partner if they had disclosed their HIV status.

More than half of the youth believed that using a con-
dom with another HIV-positive person was important.
Reinfection was the main concern, followed by pregnancy
and risk of other STDs. A 19-year-old behaviorally infected
black male explained:

“Y’all can think y’all’s pretty much got the same thing,
but something bad’s going to end up happening [to] one
of the two people, because somebody’s HIV load is worse
than another person’s.”

Youth and providers reported similar reasons for why
condoms might not be used: reduced pleasure, males’
resistance, religious beliefs, females’ lack of empower-
ment, a desire to have children and loss of spontaneity.
�Self-effi cacy for condom negotiation. While all health
care providers gave detailed accounts of counseling youth
on the mechanics of condom use, they considered the
youth to possess low self-effi cacy regarding condom nego-
tiation with a partner. As one nurse practitioner stated:

“I’ve noticed it is a little diffi cult for them to ask their
partners to use a condom. I think that has a lot to do with
their age. You know, they’re not real self-assured at that age

anyway, and then they’re initiating something that’s very
adult. And asking them to be something that they may not
be—self-assertive.”

Another nurse remarked, “There’s no way that they’re
going to say, ‘You know what? You’re not doing that until
you put a condom on.’ They’re just afraid to say that or feel
that they don’t have the right to say that.”

When the youth were asked about condom use and
negotiation, 16 of the 20 expressed a higher level of self-
effi cacy than suggested by the providers. Many reported
using a direct approach with a partner, as did the 16-year-
old perinatally infected Hispanic female who said: “You
have to use a condom now. Use it, or now you’re not going
to have sex.” However, responses from fi ve youth revealed
limited awareness of how to put on a condom, purchase
condoms and initiate a discussion of condom use with a
partner. In addition, a 17-year-old behaviorally infected
black female said, “Oh, I make sure the condom don’t
have no holes in it, it’s not old.”
�Attitudes toward pregnancy. All of the 11 youth who
discussed pregnancy (10 females and one male) expressed
interest in having a child in the future. None reported
concern about HIV transmission to a partner; rather,
concern focused on possible transmission to the baby.
For example, an 18-year-old perinatally infected black
female stated:

“I wouldn’t encourage anybody to get pregnant, because
it’s a possibility sometimes that the baby can catch AIDS.
But if you wanted to, then I would take the medications
the proper way and just do the right thing.”

Recognizing the need for family planning, many health
care providers discussed birth control with their patients.
In particular, the providers addressed the potential
decreased effi cacy of oral contraceptives when taking cer-
tain HIV antiretroviral medications, the adverse effect that
antiretrovirals can have on the baby in utero, treatment
protocols during pregnancy to reduce transmission risk,
potential transmission risk to the partner and the respon-
sibilities of parenting.
�Risk reduction strategies. Health care providers identi-
fi ed various strategies to motivate HIV-positive youth
regarding sexual risk reduction. A common strategy was to
engage in discussions with youth about the risk of acquir-
ing other STDs, reinfection with another strain of HIV and
pregnancy. A condom demonstration was another com-
monly used strategy. For example, one social worker cited
the importance of “teaching them about [condoms].
Letting them have fun with them. Letting them blow them
up and play with them … see what they are and under-
stand the importance of them. Then it isn’t a secret
anymore.” A few providers conveyed the need to fi nd ways
to increase self-esteem among HIV-positive youth.
According to one pediatrician:

“It’s empowerment, self-esteem. … They’re worth
something; they’re not worthless. That’s the most impor-
tant thing, and from there, everything else follows. It has
nothing to do with the mechanics of condoms.”

[Most youth]

expressed a

higher level of

self-effi cacy

[for condom

negotiation]

than suggested

by the

providers.

Lowering Secondary HIV Transmission Among HIV-Positive Youth

114 Perspectives on Sexual and Reproductive Health

Recommendations for an Intervention
Both youth and health care providers were asked about
the potential utility of a computer-based intervention.
Providers responded that it could help standardize and
reinforce risk reduction messages. Providers and youth
thought the computer program should include images,
interactive components and personal testimonies from
HIV-positive youth. In addition, both groups felt that wait-
ing periods within a clinical visit would offer ample time
for patients to engage in a computer-based intervention.

Recognizing that HIV-positive youth fear being stig-
matized, most providers felt that computer-based inter-
ventions within the clinic setting would help to address
confi dentiality issues. One social worker stated, “It’s more
anonymous. … They would probably feel less on the spot,
and there wouldn’t be, maybe, the anxiety.” Many health
care providers thought that disclosure could be

addressed

well in a computer-based behavioral intervention by offer-
ing peer modeling of disclosure

scenarios.

Providers also
believed that such an intervention about condom use
could enhance conversations between providers and HIV-
positive youth regarding condom use, since this is often
a diffi cult subject to broach. In addition, many providers
said any new behavioral intervention should include self-
esteem as a topic. One obstetrician-gynecologist remarked,
“[Self-esteem] has nothing to do with condoms. Most
teenagers, by the time they’re 13, they know more of the
gymnastics of sex than I do. But the self-esteem issues are
the [critical] issues.”

DISCUSSION
In this study, both youth and health care providers
reported that disclosure was a major hurdle for young
people to overcome when living with HIV. Youth’s hesita-
tion about disclosure appeared to be closely tied to their
perceptions of society’s views toward HIV-positive indi-
viduals. Specifi cally, the fear that members of their social
network would look unfavorably upon them kept youth
from disclosing their status. Similarly, other studies have
found that fear of discrimination and rejection due to HIV-
related stigma is a barrier to disclosure.12,13 The revela-
tion that both perinatally and behaviorally infected youth
are concerned about stigma suggests that HIV stigma is a
universal fear.

As found in previous research,16 youth disclosed their
status to generate support and acceptance. When asked to
describe a disclosure experience, most discussed disclos-
ing to a friend or signifi cant other. This fi nding suggests
that disclosing to individuals outside the family is fore-
most in their minds and represents a particularly stress-
ful challenge. Prior research has found that disclosure to
a signifi cant other was especially disconcerting for HIV-
positive youth.17 Perhaps youth feel that the risk of rejec-
tion and breach of confi dentiality is especially high with
people outside their family. Youth may feel that family
members share a bond that is not easily broken, whereas
others are less emotionally invested. Interventions that

include testimonies from HIV-positive youth who have
experienced favorable disclosure outcomes could provide
positive reinforcement for disclosing one’s HIV status.

Our fi nding that being HIV-positive affected partici-
pants’ level of intimacy with HIV-negative individuals
corresponds with results from a study suggesting that
infected youth may avoid penetrative sex by delaying sex-
ual debut or by engaging in touching behaviors as harm
reduction strategies.18 A study with HIV-negative youth
found that relationship satisfaction was strongly asso-
ciated with achieving the level of intimacy they wanted
with a dating partner.19 By not obtaining desired levels
of intimacy, HIV-positive youth may experience dissat-
isfaction with romantic relationships. Most research on
sexual behaviors among HIV-positive youth has exam-
ined risk reduction efforts, such as condom use, and has
overlooked intimacy issues that may directly impact the
development of fulfi lling relationships. For example, one
study’s intervention to reduce risky sexual behavior among
HIV-infected youth focused on increasing self-effi cacy of
condom use and negotiation skills, yet did not address
adolescents’ intimacy level with their partners.8

For infected youth who engage in sexual relationships,
disclosure may infl uence decisions regarding condom
use. Although one study with HIV-positive youth found
that disclosure of HIV status was positively associated
with condom use,10 a few youth in our study believed
that sex without a condom was acceptable as long as
they had disclosed their status. Similarly, another study
found that HIV-positive youth assumed that disclosure of
their status shifted the burden of possible infection and
need for protection to their sexual partners.20 This fi nd-
ing demonstrates the need to develop interventions that
increase HIV- positive youth’s motivation to protect the
partner regardless of the partner’s knowledge of their sta-
tus. One approach would be to develop exercises that pro-
vide youth with an opportunity to explore the moral and
ethical challenges of disclosure and risk reduction. Future
interventions that include a component involving an HIV-
infected adolescent’s partner could be an important tool in
addressing risk reduction.

While previous studies have reported the nonuse of
condoms among HIV-positive youth,3,21,22 actual condom
use was not assessed in this study. Although the youth
talked confi dently about using condoms with their part-
ners, their confi dence and skill level with respect to use
remained unclear. The apparent discrepancy between
providers and youth regarding self-effi cacy indicates the
importance of providers’ fully assessing clients’ skills for
proper condom use and negotiation. Future research
should examine HIV-positive adolescents’ competency
levels for these skills.

One reason for nonuse of condoms that is unique to
HIV-positive adolescents is their partner’s HIV status.
A study with HIV-positive adolescent females found
that they were more likely not to use a condom if they
perceived their sexual partners to also be HIV-infected.10

Many…

providers

thought that

disclosure

could be

addressed

well in [an]

intervention

by off ering

peer modeling

of disclosure

scenarios.

Volume 42, Number 2, June 2010 115

This may indicate that youth lack knowledge or under-
standing of the risks of HIV reinfection or acquisition of
additional STDs, and may highlight a need for explicit
prevention messages that address sex with another HIV-
positive individual.

In our study, about half of the participants wanted to
get pregnant in the future; however, they did not appear
to appreciate the link between conceiving a child and the
risk of infecting their partner. While earlier studies have
demonstrated society’s unfavorable view of HIV-positive
women choosing to have children,23,24 we could not tell
whether the youth were aware of these attitudes. Without
specifi c information about their motivations for want-
ing children, the adolescents’ desire for future pregnan-
cies suggests that they have embraced having children in
the same ways as HIV-negative individuals.24,25 This fi nd-
ing reveals the need for interventions that educate youth
about preventing HIV transmission to their partner while
trying to conceive.

The U.S. Department of Health and Human Services
recommends that HIV-infected adolescents who are clini-
cally and immunologically stable receive clinical follow-
up every 3–4 months.26 Hence, by utilizing clinic waiting
periods, behavioral interventions can occur approximately
3–4 times a year for most HIV-positive youth. Such inter-
ventions would allow for ongoing delivery and reinforce-
ment of prevention messages, which are essential for risk
reduction. In addition, conducting behavioral interven-
tions within a clinic setting could stimulate discussions
between youth and health care providers regarding sensi-
tive topics, such as safer sex. Although the providers in
this study were well trained and experienced in counseling
their patients, further research is needed to evaluate how
much youth apply their care providers’ lessons in their
everyday lives. Interventions that query youth directly and
monitor clinic encounters could enhance adolescents’ self-
effi cacy for condom use and disclosure skills, and could
be tailored to address the specifi c needs of perinatally and
behaviorally infected HIV-positive youth.

Limitations
This study has a number of limitations. It is important to
acknowledge the potential for recall bias associated with self-
reported behaviors; participants might overstate or under-
state their experiences. Some participants may not provide an
honest response regarding risk reduction behaviors because
that response may not be socially desirable or may garner
disapproval. In addition, because the participants in our
study were recruited from local HIV and AIDS clinics and an
AIDS service organization, and so received specialty care and
prevention counseling, they may have greater knowledge
and awareness about HIV and disclosure issues than HIV-
positive youth who have not been exposed to such care.

Future studies should include a large enough sample to
assess disclosure and risk reduction differences based on
gender, age and transmission mode. Also, exploring dis-
closure experiences related to the different relationships

in an HIV-positive adolescent’s life could assist in tailor-
ing techniques for counseling about disclosure with spe-
cifi c individuals. Furthermore, the CDC’s defi nition of
an adolescent covers a broad age range (13–24), which
encompasses different stages of psychological and social
development. Distinct risk behaviors may exist among
youth within these different developmental stages that
require unique intervention approaches to be effective.
For example, the initiation of sexual intercourse may be a
much less normative behavior for younger than for older
adolescent populations. Therefore, it would be benefi cial
for future studies to examine HIV-positive youth while
taking into account their developmental stage.

Finally, although adolescent participants were asked to
describe their perceptions about sexual risk reduction,
they were not asked to explain if these perceptions were
associated in any way with their sexual behavior. Thus,
we cannot comment on any potential differences between
youth who were sexually active and those who were not.
In future studies, adolescents should be asked if their per-
ceptions about risk reduction have infl uenced their sexual
experiences.

Conclusions
More interventions are needed to help HIV-positive ado-
lescents overcome multiple challenges in the areas of
disclosure and sexual risk reduction. Efforts to stem the
HIV pandemic—including universal voluntary testing and
immediate treatment for infected individuals—must com-
prise effective interventions to reduce secondary transmis-
sion.27 Health care providers need innovative educational
tools that can be used in a clinic setting to improve adoles-
cents’ skills in reducing their risky sexual behaviors.

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3. Rotheram-Borus MJ et al., Risk acts, health care, and medical
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4. Futterman D et al., HIV+ adolescents: HIV testing experiences and
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Acknowledgment
This study was conducted with funding from the Baylor College
of Medicine–University of Texas at Houston Center for AIDS
Research, under grant P30 A103621 1-12.

Author contact: aleonard@legacycommunityhealth.org

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HEALTH POLICY AND ETHICS

Facilitating HIV Disclosure

Facilitating HIV Disclosure Across Diverse Settings: A Review
Carla Makhlouf Obermeyer, DSc, Parijat Baijal, MA, and Elisabetta Pegurri, MSc

HIV status disclosure is cen-

tral to debates about HIV be-

cause of its potential for HIV

prevention and its links to pri-

vacy and confidentiality as hu-

man-rights issues.

Our review of the HIV-dis-

closure literature found that

few people keep their status

completely secret; disclosure

tends to be iterative and to be

higher in high-income coun-

tries; gender shapes disclosure

motivations and reactions; in-

voluntary disclosure and low

levels of partner disclosure

highlight the difficulties faced

by health workers; the mean-

ing and process of disclosure

differ across settings; stigmati-

zation increases fears of disclo-

sure; and the ethical dilemmas

resulting from competing

values concerning confidenti-

ality influence the extent to

which disclosure can be facil-

itated.

Our results suggest that

structural changes, including

making more services avail-

able, could facilitate HIV dis-

closure as much as individual

approaches and counseling

do. (Am J Public Health. 2011;

101:1011–1023. doi:10.2105/

AJPH.2010.300102

)

THE TOPIC OF HIV STATUS

disclosure is central to debates

about HIV, because of its links to
confidentiality and privacy as hu-
man-rights issues and its potential
role in prevention.1 Disclosure is
also considered a way to ‘‘open up’’
the HIV epidemic2 and hence is
a crucial step toward ending stigma
and discrimination against people
living with HIV and AIDS
(PLWHA). Recognizing its impor-
tance, a number of researchers
have reviewed the literature on
disclosure by women,3 by men,4 or
by parents to children.5 Others
have reviewed what is known
about the factors associated with
disclosure, including the connec-
tions among stigma, disclosure, and
social support for PLWHA6; the
links among disclosure, personal
identity, and relationships7; and
client and provider experiences
with HIV partner counseling and
referral.8 We sought to comple-
ment existing reviews by including
available information on low- and
middle-income countries, which are
poorly represented in all but 1 of
the extant literature reviews, and by
focusing on the role of health ser-
vices and health care providers in
HIV disclosure.

Recently, increased attention to
transmission within serodiscordant
couples has highlighted the po-
tential role of disclosure as a way
to encourage prevention.9 More-
over, as countries scale up HIV

testing, counseling, and treatment,
better evidence is needed to inform
laws and policies, particularly re-
garding how best to facilitate dis-
closure while protecting medical
confidentiality. Ongoing debates
about mandatory disclosure to
partners, health workers’ role in
disclosing without patients’ consent,
and the criminalization of HIV
transmission raise important ques-
tions about the place of disclosure
in the fight against HIV and about
the human-rights dimension of dis-
closure policies. These debates
also underscore the need for a
careful review of the evidence on
disclosure, an examination of in-
dividual motivations and experi-
ences around disclosure, an as-
sessment of the role of health
workers, and a better understand-
ing of the societal determinants
and consequences of disclosure in
diverse settings.

METHODS

We conducted an electronic
search of databases for journal
articles and abstracts, focusing on
HIV disclosure by adults living
with HIV. Disclosure is defined
here as the process of revealing
a person’s HIV status, whether
positive or negative. HIV status is
usually disclosed voluntarily by
the index person, but it can also be

revealed by others with or without
the index person’s consent. We
conducted the search in PubMed,
PsychINFO, Social Sciences Cita-
tion Index, and the regional data-
bases of the World Health Orga-
nization, including African Index
Medicus, Eastern Mediterranean,
Latin America, and Index Medicus
for South-East Asia Region. The
search used the keywords ‘‘disclo-
s(ure), notif(ication)’’ and ‘‘HIV or
AIDS.’’ The search retrieved a to-
tal of 3463 titles published be-
tween January 1997 and October
2008. After a scan of titles and
abstracts, we retained 231 sources,
including 15 abstracts from the
2008 International AIDS Confer-
ence and 11 reviews or commen-
taries.

We included sources in this re-
view if they were original studies
or literature reviews that had
appeared in peer-reviewed publi-
cations and if they reported on the
levels or process of disclosure (to
whom, when, and how), the de-
terminants of and reasons for dis-
closure, and the consequences of
and incidents associated with dis-
closure, such as life events, risk
behavior, stigma, and discrimina-
tion. Articles that focused exclu-
sively on children’s HIV status
were excluded, but we refer to
children if their parents disclosed
to them. We consulted the

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regional databases of the World
Health Organization to find arti-
cles about resource-limited set-
tings. This review also drew on
related reviews of the literature on
HIV testing, stigma, treatment, and
prevention by Obermeyer et al.10,11

Studies published after October
2008 were not included in the
tabulations, although they may be
cited in the discussion.

Table 1 presents the character-
istics of the studies included in this
review. Of the 231 articles in-
cluded, more than two thirds (157
studies) came from high-income
countries, mainly the United
States. Most studies in low- and
middle-income countries (49 out
of 76) were from sub-Saharan
Africa. A total of 98 studies were
conducted among heterosexual
adults of both sexes, 49 specifi-
cally among women, and 35

among men who have sex with
men, of which 31 were conducted
in the United States.

Most of these studies (134 of
231) were based on quantitative
surveys, and they provide fre-
quencies on different aspects of
disclosure. However, a consider-
able number (74 studies) used
qualitative methods, including
in-depth interviews and focus-
group discussions, and some (11
studies) combined questionn-
aires with qualitative methods,
often to explore the relational
context of disclosure and how
individuals coped with their HIV
status.

LEVELS AND PATTERNS OF
DISCLOSURE

Table 2 summarizes the results
of studies on levels and patterns of

disclosure in general as well as
disclosure to specific categories of
people, such as sexual partners,
family members, and friends.
Overall, a striking finding of this
review was that the majority of
people disclosed their HIV status
to someone. The levels of reported
disclosure to anyone, as shown in
Table 2, ranged mostly from
about two thirds to about three
fourths of respondents, with a few
lower rates in sub-Saharan Africa.
Three studies explicitly refered to
involuntary disclosure, but the rest
were concerned with voluntary
disclosure exist, suggesting that
most people willingly disclosed
their HIV status.

The frequencies summarized in
Table 2 indicate that gender dif-
ferences in levels and patterns of
disclosure exist. Women (as
mothers and sisters) were more

frequently mentioned than were
men as recipients of disclo-
sure. Only a few studies have in-
vestigated gender differences
in HIV-positive disclosure rates
to partners, and the findings have
been mixed. Some found no
gender differences, as in Ethio-
pia103,104 and Mali,105 or higher
disclosure rates by HIV-positive
men (84%) than HIV-positive
women (78%).71 Several found
higher rates by women, as in
Burkina Faso and Mali,105 South
Africa,73 and the United States.17

Regardless of whether there were
significant gender differences in
disclosure rates, most studies docu-
mented substantial gender differ-
ences in the contexts of, barriers
to, and outcomes of disclosure.

Other differences in disclosure
frequency had to do with HIV
status and to whom status was

TABLE 1—Characteristics of Studies on Disclosure of HIV Status, January 1997–October 2008

Populations Sampled

Countries

Adults, Both

Genders

Heterosexual

Men Only

Men Who Have

Sex With Men

Women Only,

Including PMTCT

Injection

Drug Users

Parents’ Disclosure

to Children Total

High income

United States 41 6
a

31
a

22 10 23 133

United Kingdom 4 . . . 2 1 . . . . . . 7

Western Europeb 7 . . . . . . . . . 1 2 10

Australia 4 . . . . . . . . . . . . . . . 4

Canada 1 . . . . . . 1 . . . . . . 2

Saudi Arabia 1 . . . . . . . . . . . . . . . 1

Low and middle income

Sub-Saharan Africa 25 . . . 1 20 . . . 3 49

Asia 12 1 . . . 5 2 . . . 20

Eastern Europe 1 . . . . . . . . . . . . . . . 1

Latin America, Caribbean 2 1 1 . . . . . . . . . 4

Total 98 8 35 49 13 28 231c

Note. PMTCT = prevention of mother-to-child transmission. Ellipses indicate that no studies were reviewed from that country or region.
aMarks and Crepaz12 includes both homosexual and heterosexual men.
bWestern Europe does not include the United Kingdom.
cMedley et al.3 covers both Africa and Asia; Grinstead et al.13 covers both Africa and Latin America.

HEALTH POLICY AND ETHICS

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TABLE 2—Studies (n = 96) on Levels and Patterns of HIV Status Disclosure, January 1997–October 2008

Population (Location) No. of Studies Disclosure to Anybody, % Disclosure to Sexual Partners, % Disclosure to Family, % Disclosure to Friends, %

United States (n = 46)

Adults14–23 10 82 56–81 (casual partners 25;

main partners 74)

70–87 (77–79 to mothers;

47–65 to fathers)

26–88

Parent to children
24–34,a,b

11 30–75 to parents;

32–62 to children

Men
35–36

2 53–60

Women37–45 9 96–100 68–92 60–84 (66–81 to mothers;

25–51 to fathers)

28–83

MSM12,17,46–55,c 12 80–97 54–80 (38-42

casual partners)

50 (37–67 to mothers;

23–47 to fathers)

85

Injection drug users
56,57

2 61–86

Europe (n = 10)

Adults (France,
58–60

Russian Federation,
61

Sweden,
62

United Kingdom
63–65

)

8 85–97 88–97 53–77 57–79

Parent to children (Belgium66) 1 10 to children

Women (United Kingdom67) 1 81

Sub-Saharan Africa (n = 26)

Adults (Burkina Faso,68 Ethiopia,69 Kenya13,d,

Nigeria,
70

South Africa,
71–74

Uganda,
75

Tanzania,
76,77

Zambia
78

)

12 22–96 28–91 (65 by men;

73 by women)

60–75 6–43

Parent to children (South Africa,
79

Uganda
80

) 2 44–50
e

Women (Burkina Faso,
81,82

Côte d’Ivoire,
83

Kenya,84,85 Malawi,86 South Africa,87–89

Tanzania90–92)

12 22–94

(46 HIV + ; 97 HIV–)

17–90 (64 HIV + ;

80 HIV–)

20–22 15

Asia (n = 8)

Adults (China,93 India94–96,f) 4 (35 involuntary;

65 voluntary)

70 (100 by women;

65 by men)

78 7

Men (Taiwan
97

) 1 72

Women (India,
98

Thailand
99

) 2 37–84 34 family or friends 34 family or friends

Injection drug users (Vietnam
100

) 1 0 (no respondents

disclosed)e

Caribbean (n = 1)

Adults (French Antilles/Guyana101) 1 70 85 56

Reviews (n = 5)

Adults
7,8,102

3 68–97 22–86 (70-92 LIC; 44–67 HIC) 61–86

Men
4

1 67–88

Women
3

1 17–86

Note. HIC = high-income countries; LIC = low-income countries; MSM = men who have sex with men. For multiple studies on a country or population, the table presents the range of disclosure rates
(minimum and maximum) reported in the studies.
aEmlet also reported that adults aged 50 years or older disclosed their HIV status to those in their social networks less frequently than younger adults did.34
b
Two statistics are included: the percentage of parents who reported disclosing to children and the percentage of children who were told by their parents.

c
The study by Marks and Crepaz of HIV-positive men (homosexual, bisexual, and heterosexual) is counted under MSM, who represent the majority of the study sample.

12
Similarly, the Weinhardt

et al. study of MSM, women, and heterosexual men is counted under MSM, who represent the majority of the study sample.
17

dGrinstead et al. covers Kenya, Tanzania, and Trinidad, but it is listed under Africa and counted once under Kenya.13
eIncludes data from studies with fewer than 25 participants.
fIn Mulye et al., patients’ spouses (23%) and relatives (2%–12%) knew patients’ HIV status after it was disclosed to patients in their presence.94

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HEALTH POLICY AND ETHICS

disclosed. Studies that included
information on HIV status almost
always reported that disclosure
was lower when HIV status was
positive. Disclosure to relatives
was higher than was disclosure to
friends. Partner disclosure varied
greatly, but it was generally lower
with casual partners than it was
with steady partners.

Some studies explored sociode-
mographic factors that influence
disclosure, principally residence
and ethnicity. For example, re-
search in South Africa found
higher disclosure rates in urban
settings than in rural settings.106 In
the United Kingdom, studies found
that African men were less likely
than were White men to tell their
partners about their HIV infection
(66% vs 86%, respectively63) and
were less likely than were White
men to disclose to relatives, part-
ners, or work colleagues.64 Simi-
larly, a study in French Antilles and
French Guyana found that non-
French citizens were less likely to
disclose to a steady partner than were
French citizens,101 and studies in the
United States found that African
Americans disclosed less often than
did European Americans.34,107

Such results suggest that indi-
viduals from racial/ethnic minor-
ity groups have greater concerns
about stigmatization if they dis-
close their status. Socioeconomic
factors and access to resources
also appear to play an important
role. In the South African study
mentioned earlier,106 urban com-
munities with higher disclosure
rates had more institutional sources
of support, including nongovern-
mental organizations and hospitals.
Research from Nigeria and among
migrants from Africa in Sweden

revealed that more educated re-
spondents disclosed more often
than did their less educated coun-
terparts.62,70 Similarly, a study
from India found a higher rate of
disclosure to partners by literate
respondents compared with illiter-
ate respondents (86% vs 44%, re-
spectively96). Conversely, low-wage
employment and economic vul-
nerability reduced disclosure by
Tanzanian women,91 Dominican
male sex workers,108 and Canadian
female sex workers.109 Such results
suggest that economic and social
disadvantage make disclosure more
difficult. This finding is consistent
with the frequencies in Table 2,
which tended to be higher in
higher-income countries (the
United States and Europe), whereas
levels in developing countries of
Africa, Asia, and the Caribbean
showed much greater variation.

VARIATIONS IN THE
CONCEPT AND PROCESS
OF DISCLOSURE

We found that different pro-
cesses have been subsumed under
the concept of disclosure, under-
scoring the need for researchers to
clarify more consistently how dis-
closure is measured. Quantitative
studies have shown large differ-
ences in disclosure frequencies
depending on what information
was given and by whom, whether
HIV status was positive or nega-
tive, and whether that status was
disclosed to 1 or more persons, to
anyone, to sexual partners, to
friends, or to family. Qualitative
studies, on the other hand, have
raised questions about the multi-
ple dimensions and meanings of
disclosure.

Disclosure is not always volun-
tary, an issue raised primarily
(though not exclusively) in studies
conducted outside Europe and the
United States. Varga et al.88

reported that in South Africa, 32%
of disclosure to family members
was involuntary. Similarly, in India,
35% of male and female respon-
dents reported that their HIV status
had been disclosed without con-
sent,95 and relatives sometimes
found out a person’s HIV status
when it was disclosed in their pres-
ence by someone else.94

Research has found large vari-
ations in the amount of informa-
tion that people reveal. For exam-
ple, only about half of respondents
in a study from India disclosed
the exact nature of their illness
to those around them; others pre-
ferred partial disclosure or re-
ferred to a less stigmatizing illness,
such as fever, heart problems, or
general illness.95 A US study found
that 54% of respondents reported
having received full disclosure.15

Parents tended to disclose partially
to their young children and more
fully to their adolescent children.110

Rather than being a one-time
event, as it is sometimes assumed
to be, disclosure is often a gradual
process of disclosing to an in-
creasing number of others in one’s
networks over time. For example,
a study among homosexual and
bisexual men in the United King-
dom found that immediately after
diagnosis, respondents were more
likely to opt for nondisclosure,
but later they used disclosure as
a mechanism for coping with the
disease.111 In a study in South
Africa, many HIV-positive men and
women waited substantial periods
of time before disclosing to their

partners, including 15% who
waited more than a year.71 Among
a sample of gay Latino men in the
United States, half disclosed to
someone on the day they found out,
and another 15% disclosed within
a few days, but about 20% did not
tell anyone for 1 year or more.54

Among a sample of HIV-positive
pregnant women in Tanzania, dis-
closure to a partner increased from
22% within 2 months of diagnosis
to 40% after nearly 4 years.91

Other studies among heterosexual
men and women, young people,
and attendees of an outpatient HIV
clinic found that disclosure had
a positive association with the
length of time since diagno-
sis15,20,34,65,112 and with disease
progression.19,74,113

Some qualitative studies ex-
plored differences among those
who disclose and those who do
not, such as the criteria motivating
decisions, the process of commu-
nication, and coping styles. The
results of these studies tended to
converge around certain key
points: selective disclosure is the
most frequent strategy, a minority
of people fall in the ‘‘never dis-
close’’ or ‘‘always disclose’’ cate-
gories, disclosure decisions have
to be made repeatedly, and dis-
closure decisions change over
time.7,41,114—117 Other qualitative
studies have provided insight into
the process whereby individuals
weigh the risks (fear of abandon-
ment and discrimination) and ben-
efits (need for support) of disclosure
before making a decision.118 These
studies underscore the importance
of relationships, trust, emotions,
perceptions of self, and perceptions
of HIV status. Most of these studies
were conducted in the United

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HEALTH POLICY AND ETHICS

States, tended to emphasize the
psychological aspects of disclosure,
and focused on individual factors
and processes, but some considered
the social context of disclosure in
Africa,77,106 and others analyzed
the connections between the
choices made by individuals and
the ethical debates and social poli-
cies around HIV disclosure.119

ATTITUDES, REACTIONS,
AND BEHAVIORS AFTER
DISCLOSURE

Much has been written about
the stigma associated with disclo-
sure of HIV-positive status. Fear of
stigma is thought to discourage
disclosure, and disclosure has of-
ten been considered a proxy
measure for stigma, because peo-
ple living with HIV are more likely
to disclose in low-stigma contexts,
where they expect fewer nega-
tive consequences.120 Conversely,
there is a vast literature on dis-
crimination (sometimes defined as
enacted stigma) faced by those
whose HIV status is disclosed by
others, often without their consent.
Women are thought to face spe-
cial barriers related to fears of
stigma, as documented in numerous
sources.3,41,42,76,84,90,92,99,115,121—123

Research has drawn attention to
negative consequences of disclosure,
such as disrupted relationships with
families and communities124,125;
isolation, criticism, and ostracism
by family members68,126; abuse,
violence, divorce, or separation
from partners; and rejection by
friends.43,84,89,127

However, it has been difficult to
document the causal link between
HIV disclosure and adverse
events, in part because baseline

rates of negative experiences such
as violence are often unknown,
and because HIV-positive individ-
uals who eventually face negative
reactions often come from disad-
vantaged groups that are already
at high risk for violence.128 For
example, although some evidence
suggests that women with risk fac-
tors such as a history of drug use
are more likely to experience neg-
ative social and physical conse-
quences when their infection be-
comes known,43,129 violence was
not significantly higher among a
sample of HIV-positive women
compared with demographically and
behaviorally similar HIV-negative
women in the United States.130

Nevertheless, evidence indicates
that fear of stigma, discrimination,
and violence decreases willingness
to disclose HIV status in many
settings.3,115,121,125,131—138

Reviews of the literature have
shown that reactions to disclosure
ranged from negative to neutral to
supportive, and that negative re-
actions from family, friends, em-
ployers, and the community were
relatively low––about 3% to 15%
of cases.3,8,43,96,129 Studies in di-
verse contexts have documented
high levels of supportive reactions
to HIV-positive persons.68,119,139,140

For example, nearly half of the HIV-
positive women in the often-cited
study from Tanzania90 reported
that their partners were supportive,
as did 73% of women in a Kenyan
study.84 Studies in South Africa
found that reactions to disclosure
included trust, support, and under-
standing,74 and that 19% of disclo-
sures resulted in kindness and 70%
in no change of attitude.89 A posi-
tive correlation between disclosure
and social support has been

documented in a meta-analysis6 as
well as in studies from contexts as
varied as Greece, Kenya, South
Africa, Tanzania, Trinidad, and the
United States.13,18,44,71,90,139,141

However, these results must be
interpreted in light of differences in
types of populations and levels of
disclosure. Reactions of support are
more likely where HIV-positive in-
dividuals are not seen as responsi-
ble for getting HIV, whereas those
seen as having been infected be-
cause of their own behavior may
face negative reactions. In addition,
low disclosure and high support
may indicate that individuals are
careful not to disclose their HIV
status if they expect negative re-
actions.92

Studies have also examined the
behavioral outcomes of disclosure,
including its possible effect on
safer sex. Disclosure of HIV-posi-
tive status to partners has been
associated with safer sexual prac-
tices in the United States,17,21,142,143

France,60 and Cameroon.144 Simi-
larly, a study in South Africa found
that condom use was higher (57%)
among women who disclosed
their status than it was among those
who did not (38%).73 Unprotected
sex was also more frequent among
groups of men who have sex
with men, heterosexual men, and
women who did not disclose than
it was among those in each cate-
gory who did.145 Other risk be-
haviors, such as having multiple
sexual partners, have also been
associated with nondisclosure, as
documented in a review.4 Studies
among injection drug users and
men who have sex with men in the
United States revealed that sexual
risk behaviors were highest among
inconsistent disclosers, followed by

nondisclosers; consistent disclosers
reported fewer sexual risk behav-
iors, although the evidence was not
always unequivocal.51,56

Indeed, not all studies have
found an association between
disclosure and safer behav-
iors.12,22,50,55,146,147 The difficulties
of documenting effects and estab-
lishing the direction of causality are
common to studies of prevention in
general, and we found a literature
review on disclosure that reported
contradictory results, with positive
effects sometimes limited to a sub-
group of participants, such as HIV-
negative partners or nonprimary
partners.148 These inconsistent re-
sults may be partly attributable to
confounding factors such as alcohol
or drug consumption, which in-
crease risk-taking regardless of dis-
closure. In addition, because safer
sex requires explicit discussions be-
yond simply disclosing HIV sta-
tus,35 the effect of disclosure needs
to be considered in relation to other
behaviors and attitudes.

DISCLOSURE, HEALTH
SERVICES, AND HEALTH
PROVIDERS

The influence of health services
on disclosure has not been sys-
tematically examined, but we can
piece together information on 3
interrelated questions: first,
whether staff at health facilities
contribute to reducing stigma and
discrimination, thus normalizing
HIV; second, whether they en-
courage disclosure by HIV-posi-
tive persons and promote testing
and referral of partners and family
members; and third, whether they
are prepared to counsel and sup-
port those who are tested, to

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HEALTH POLICY AND ETHICS

facilitate voluntary disclosure and
support.

The extent to which health fa-
cilities promote disclosure de-
pends in part on whether they
provide a supportive context for
the difficult experience of being
HIV positive. Evidence suggests
that health facilities sometimes fall
short in this regard. Discrimination
against HIV-positive individuals
was reported to occur when health
workers treat them differently,
use excessive precautions, or
withhold appropriate care.149—151

Fears of being treated poorly were
reported more frequently by
women than men. In Australian
health facilities, more women than
men reported fearing discrimina-
tion in the form of avoidance of
treatment, extra precautions, and
confidentiality problems, and in
Kenyan maternity wards, health
workers expressed anxiety when
caring for women who may have
been HIV positive and admitted
that they used ‘‘extra care’’ in han-
dling them; such situations contrib-
uted to delays and suboptimal care,
such as reluctance to take HIV
tests or to give birth at health
facilities.152—154 These studies also
reported that stigma and discrimi-
nation are declining.

Another indication of how dis-
closure is linked to health services
comes from studies that examined
its connection with adherence to
antiretroviral therapy. Initiatives
to provide antiretroviral therapy
sometimes require that patients
disclose to a supportive individual
in their network, on the basis of
a large body of evidence indicating
that disclosure facilitates initiation
of and adherence to antiretro-
viral therapy, whereas worries

about disclosure contribute to se-
crecy and missed medica-
tions.88,155—160 Most studies on the
subject focus on adherence, and
more information is needed about
the process of disclosure when it
is a condition for antiretroviral
therapy.

Health facilities are often ill
equipped to reassure PLWHA that
they will be treated well, and
health workers may not have the
training to counsel patients or the
competence to judge how to dis-
close patients’ HIV status or to
whom it should be disclosed.161,162

For example, a study from Vietnam
found that health workers felt so
uncomfortable discussing HIV with
patients that they avoided giving
women their HIV test results di-
rectly; instead, they relied on the
official notification system, which
informs local district officials about
the HIV status of people living in
their catchment area without pa-
tients’ consent.163 This nonconfi-
dential process sometimes has seri-
ous social, economic, and health
consequences for HIV-positive
women and their children.

In addition, health workers
sometimes communicate test re-
sults to individuals other than
HIV-positive patients, as docu-
mented in numerous settings. For
example, in a comparative study in
India, Indonesia, the Philippines,
and Thailand, 34% of HIV-posi-
tive respondents reported that
health care workers had revealed
their HIV status to someone else
without their consent.151 One In-
dian study found that 61% of
women reported that family mem-
bers were given test results without
the patient being consulted164; an-
other found that 35% of

respondents (male and female)
reported that their HIV status was
disclosed to friends or relatives
without their consent (in 75% of
cases the disclosure was made by
health workers).95 Similarly, a study
in China found that health pro-
viders often informed family mem-
bers of an HIV diagnosis before
informing the patient.165 One study
suggested that privacy breaches by
health workers in India were more
frequent for female clients and in
the private sector.161

Involuntary disclosure by
health workers has been attrib-
uted in part to circumstances at
health facilities, which often lack
private spaces and where it is
difficult to manage patient files
without compromising confidenti-
ality. More importantly, however,
the issue of involuntary disclosure
by health workers highlights the
difficulty of balancing medical
confidentiality with the need to
facilitate disclosure to those
around an HIV-positive person.
Health workers are supposed to
encourage testing of partners and
family members and to promote
disclosure to mobilize support for
treatment and prevention, but
these objectives are often incom-
patible with guaranteeing absolute
patient confidentiality.

The difficulty of promoting
partner disclosure is manifested
in the low rates of partner refer-
ral.21,82,90,166 A review of 15 studies
from sub-Saharan Africa and Asia
found that partner disclosure by
HIV-positive women ranged from
17% to 80%, with lower rates
generally reported by women
tested during antenatal care, com-
pared with women undergoing
voluntary HIV testing and

counseling.3 This finding suggests
that the mode of testing makes
a difference to HIV disclosure, but
also that women’s vulnerability
during pregnancy increases their
reluctance to disclose.11 For exam-
ple, only 23% of partners of HIV-
positive women attending a pro-
gram on prevention of mother-to-
child transmission in Côte d’Ivoire
were subsequently tested for
HIV.83 Only 17% of HIV-positive
pregnant women in a study in
Tanzania reported their test results
to their partners.92 The fact that
69% of partners who agreed
to test were seropositive under-
scores the missed opportunity for
prevention.

Some studies suggest that HIV-
positive health workers find dis-
closure difficult because they
worry that they may be stigma-
tized or that a positive diagnosis
will mean they have failed as
a role model. These fears may
hamper their own ability to be
tested, to disclose, and to promote
testing, as documented among
health workers in Kenya162 and
Malawi.167

Despite these difficulties, some
studies have shown that health
workers can help people cope with
disclosure and its aftermath. In
Sweden, contact with counselors
increased the probability of disclo-
sure by immigrant African families,
filling a gap in their disrupted social
network.62 In a study in China,
good relations between patients
and providers led to positive health
outcomes after disclosure, particu-
larly when families were unsup-
portive because of HIV-related
stigma.165 More evidence is needed
to demonstrate how health workers
can support HIV disclosure.

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HEALTH POLICY AND ETHICS

SOCIAL CONTEXT OF
DISCLOSURE

Although frequencies and sta-
tistical associations provide useful
information about levels of dis-
closure and their possible deter-
minants, they also raise questions
about differences in the meaning
of disclosure, the consequences of
disclosure, and the roles of health
providers in different sociocultural
settings. The evidence suggests
that social context influences key
dimensions of disclosure, in par-
ticular the notion of support, the
role of the family, and the values
surrounding disclosure.

Qualitative studies that examine
individual experiences have
shown that disclosure is closely
related to expectations of support.
These studies have also shown
that disclosure is higher when in-
dividuals hope to receive help
from those around them, and it is
lower when they expect blame
and discrimination. As a lengthy,
potentially fatal illness, HIV infec-
tion represents a possible rupture
of the rules of reciprocity that are
the basis of social interactions,
and a potential drain on resources
for those around the ill person.168

That is why, in diverse contexts––
such as the Dominican Republic,
Malawi, and Tanzania––individuals
thinking about disclosure try to
predict how others will react,
based on the disclosers’ perceived
responsibility for the infection and
on the quality of their relationships
with those around them.76,77,86,133

Emotional support is important
everywhere, but in low-resource
settings where services are defi-
cient and individuals need mate-
rial support from their families and

communities, there are stronger in-
centives to disclose. At the same
time, however, there are also more
risks in disclosing in these settings,
precisely because PLWHA are
explicitly or implicitly making im-
mediate or future demands on
those around them. Hence, a sub-
tle difference can be discerned
when comparing both qualitative
and quantitative studies in re-
source-rich settings to those in re-
source-poor settings. Respondents
in resource-rich settings, such as
the United States and France,
tended to describe disclosure as a
way to obtain psychological sup-
port and relief from the stress of
harboring a secret,18,58,102 whereas
those in resource-poor settings,
such as China, India, Kenya, Nigeria,
and South Africa, mentioned ex-
pectations of financial and social
support,70,72,169 emotional and ma-
terial support,95 and help with
medical care and counseling.93

Social context also shapes the
extent to which disclosure deci-
sions are made by others beyond
the individual, as documented in
both quantitative and qualitative
research. In settings where ade-
quate health services and social
services are lacking and kinship
bonds continue to be strong, fam-
ilies and communities may be seen
as having responsibilities toward
ill individuals and therefore as
having a right to be informed about
an HIV-positive result.93,125,147 If,
as in India, close involvement of the
family is thought to be in the best
interest of the patient, then a
health worker’s breach of confi-
dence can be seen as choosing to
conform to local social norms
rather than to national stan-
dards.161 In many settings,

physicians are thought to have the
authority to decide on disclosure, as
documented in a comparative study
in Asia and the Middle East, where
80% of Saudi physicians reported
that they would disclose a patient’s
HIV status to their family without
his or her consent.170 Practitioners
often think they know better than
poor or uneducated clients, partic-
ularly women, and they involve
families as a way of recognizing
hierarchies within families that lead
some members to make health de-
cisions on behalf of others.95,171 A
qualitative study from Lesotho
found that when health workers
kept patients’ HIV status strictly
confidential, family caregivers
sometimes lacked crucial informa-
tion needed to secure appropriate
medical care.172

Thus, the social context of dis-
closure may define 2 competing
sets of values: those designed to
respect patients’ privacy and con-
fidentiality, and those meant to
assist and protect those around the
patient. Health workers may be
caught between these conflicting
values and may feel that they
should provide information to
family members, either to rally
support for an HIV-positive per-
son or because they feel some
responsibility to those around that
person if patients themselves re-
fuse to disclose.173

The legal context also influ-
ences the extent of disclosure and
its consequences. A number of
countries have enacted laws or
formulated policies to encourage
disclosure or to mandate disclo-
sure to partners. This has hap-
pened in the United States,174,175

Canada,176 Singapore,177 and
countries of west and central

Africa.178,179 In addition, manda-
tory premarital HIV testing and so-
called ‘‘beneficial disclosure,’’ which
allows health workers to disclose
patients’ status without their con-
sent, are being discussed in African
countries.180,181 Elsewhere, as in
some countries of the Middle East
and north Africa, the majority of
HIV testing appears to be manda-
tory, with no guidance on disclo-
sure.182 These situations raise
a number of ethical and legal issues
that are beyond the scope of this
article and about which much has
been written. Here, it is important to
note that the legal context has an
impact on institutional support for
disclosure at health facilities in the
form of guidelines, protocols, pro-
grams, and other resources that
enable health workers to help
around disclosure. The legal con-
text also affects individuals’ per-
ceived incentives and motivations
for disclosure.

As a process of sharing infor-
mation about a sensitive topic,
HIV status disclosure takes on
different meanings in different
contexts. The absence of exact
equivalents for the term ‘‘disclo-
sure’’ in languages other than
English testifies to the different
connotations it can have (e.g., re-
vealing a secret, admitting guilt, or
simply stating a medical fact).
These complex meanings are
linked to moral and ethical valua-
tions. The ethical and moral di-
mensions of deeply personal
choices around sex and dis-
closure have been highlighted in a
thoughtful US study,119 and com-
parable analyses are sorely needed
to better understand the reality of
moral challenges and how they are
addressed in other settings. It has

June 2011, Vol 101, No. 6 | American Journal of Public Health Obermeyer et al. | Peer Reviewed | Health Policy and Ethics | 1017

HEALTH POLICY AND ETHICS

been claimed that a policy focused
on individual rights, confidentiality,
and professional counseling dis-
tances the family and community
from their role in providing HIV
support173 and may be incompati-
ble with traditional notions of col-
lective family responsibility.165

The tension between the ethics
of individualism and communal-
ism is beyond the scope of this
article, but it is clear that the
difficulties of disclosure reflect the
potential conflict between com-
peting ethical values. Some au-
thors argue that the right of sexual
partners to be informed and pro-
tected is as important as the pri-
vacy of PLWHA183 and that when
respect for confidentiality increases
the risks to third parties, then rou-
tine third-party disclosure may be
the lesser of the evils.184 Managing
the value conflict underlying rec-
ommendations about disclosure rep-
resents an important challenge for
all the actors involved––individual
partners, health workers, and
policymakers.41

CONCLUSIONS

The studies on disclosure that
we have reviewed here show that,
first, although disclosure is diffi-
cult, few people keep their HIV
status completely secret. Levels of
disclosure are generally high, but
lower levels are documented
among certain populations, partic-
ularly women tested during pre-
natal care. This finding suggests
that attention should be directed
to these groups to better under-
stand circumstances that favor or
hinder disclosure. Second, not all
studies on disclosure disaggregate
results by respondents’ HIV status;

but this information is essential,
because HIV-positive status is
consistently linked to lower dis-
closure rates, a point that under-
scores the prevention implications
of lower disclosure among those
more likely to transmit the infec-
tion. Third, disclosure is more
uniformly high in the high-income
countries of Europe and the
United States, and frequency var-
iations are wider in low- and mid-
dle-income countries. These dif-
ferences likely reflect differential
availability of and access to re-
sources to deal with HIV and its
consequences. Fourth, women
appear to disclose, and to receive
disclosure, more frequently than
do men, but married and preg-
nant women encounter special
difficulties with partner disclo-
sure. Further research should
seek to identify those specific
gender-related factors that may
facilitate disclosure and mitigate
its negative consequences.

Analyses of disclosure as a pro-
cess show that decisions regarding
what information to disclose, to
whom, and when are iterative and
selective, such that partial and
gradual disclosure to a growing
number of people is more com-
mon than is one-time full disclo-
sure to all; also, disclosure to
sexual partners is often more dif-
ficult than to others. The implica-
tions of these results are clear:
partner disclosure deserves special
attention, given its consequences
for transmission; initiatives to
support disclosure need to be on-
going, rather than focusing on
a single point in time; and coun-
seling cannot be the same at all
stages but should consider evolving
motivations and consequences.

A main goal of this review was
to assess the extent to which
health facilities and health work-
ers facilitated disclosure. We
found that health worker facilita-
tion of disclosure was limited by
the potential for discrimination at
health facilities, the limited coun-
seling abilities of many health
workers, and health workers’ own
fears and concerns regarding HIV.
The relatively high frequencies
of health workers disclosing peo-
ple’s HIV status without their
consent and the low levels of
partner disclosure, particularly in
less developed countries, testify to
the difficult balance between en-
couraging disclosure and keeping
HIV status confidential. Health
workers on the front lines need
support as they negotiate these
complicated situations.

At the same time, however,
a number of reports indicate that
health workers can help with dis-
closure, provided that they are
supported in multiple ways. There
have been calls to give nurses
a role in assisting women with
their disclosure decisions,115 to
support community- or home-based
HIV care programs,185 to facilitate
couple counseling, and to promote
disclosure while reducing the risk of
discrimination and violence against
women. The successes reported
by some programs suggest promis-
ing possibilities, such as strength-
ening health workers’ communica-
tion skills and increasing their
perceived self-efficacy, providing
ongoing support for women
working through disclosure deci-
sions, and mediating disclosure
through counselors in the clinic or
through friends or family mem-
bers outside the clinic.186 In

Rwanda, a package of strategies––
including systematic couple coun-
seling and community-based cam-
paigns––seems to have overcome
some barriers to disclosure and has
increased the uptake of HIV testing
by male partners of pregnant
women from 7% in 1999 to 84%
in 2009.187 Further evidence is
needed to identify the optimal
combination of interventions that
would support health workers’ ef-
forts to facilitate disclosure while
ensuring that disclosure is used as
the basis for mobilizing support
for those who need it.

We also found differences in
the meaning of disclosure across
settings. Although emotional fac-
tors related to relationships and
trust influenced motivations to
disclose everywhere, respon-
dents from resource-rich settings
put a somewhat greater emphasis
on psychological relief, whereas
those in resource-poor settings
more often referred to needs for
material support and caregiving as
a reason for disclosing. These mo-
tivations may change with in-
creased access to free treatment,
however, as individuals have less
need to disclose to their families to
obtain material support and have
greater access to support groups.
Thus, the meaning of disclosure
may shift from divulging a secret to
sharing a new identity built on
serostatus.

The ethical dilemmas resulting
from competing values––the con-
fidentiality of patient informa-
tion versus the need to inform
and protect others around the
PLWHA––are especially marked
in contexts in which family and
community remain important
structures and in which relatives

1018 | Health Policy and Ethics | Peer Reviewed | Obermeyer et al. American Journal of Public Health | June 2011, Vol 101, No. 6

HEALTH POLICY AND ETHICS

and community members are
expected to play a major role in
medical decision-making, care
giving, and material support for
PLWHA. Cross-cultural compari-
sons of what constitutes commu-
nities and of the values attached to
consent and confidentiality show
a great deal of variation.188—190 A
better understanding of how confi-
dentiality is perceived in different
cultural contexts can help identify
areas of flexibility that can be used
to facilitate disclosure where
appropriate. Support for disclosure
cannot wait for a resolution of
the ethical dilemmas around confi-
dentiality, but the debates around
disclosure and the policies that
are formulated to promote it
should, at a minimum, be in-
formed by evidence on how in-
dividuals in the field address
these situations.

Research also confirms the re-
ciprocal connections among
stigma, social support, and disclo-
sure. Expectations of support are
a crucial factor in the decisions of
PLWHA to disclose, and reactions
to these disclosures are, in part,
influenced by the sacrifices that
may be required from those
around them. Stigmatization in-
creases these potential sacrifices,
and support services reduce them.
Thus, fears around disclosure re-
flect available levels of resources
and social support. Taken to-
gether, these results suggest that
structural changes––including
making more services available
to support PLWHA, their families,
and communities––could be as
important as individual ap-
proaches or the provision of
counseling. j

About the Authors
Carla Makhlouf Obermeyer is with the
Department of HIV/AIDS, World Health
Organization, Geneva, Switzerland. Parijat
Baijal is with the Global Fund to Fight
AIDS, Tuberculosis and Malaria, Geneva,
Switzerland. Elisabetta Pegurri is with
UNAIDS, Geneva, Switzerland.

Correspondence should be sent to Carla
Makhlouf Obermeyer, Department of
HIV/AIDS, World Health Organization,
20 Ave Appia, 1211 Geneva, Switzerland
(e-mail: obermeyerc@who.int). Reprints
can be ordered at http://www.ajph.org by
clicking the ‘‘Reprints/Eprints’’ button.

This article was accepted December 9,
2010.

Note. The views expressed here are those
of the authors and do not represent those of
the World Health Organization; the Global
Fund to Fight AIDS, Tuberculosis and
Malaria; or UNAIDS.

Contributors
C. M. Obermeyer conceptualized the
study, coordinated the analyses, and led
the writing of the article. P. Baijal and E.
Pegurri conducted the searches, summa-
rized the results, and participated in
writing the article.

Human Participant Protection
No protocol approval was necessary be-
cause the study did not involve any
human research participants.

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HEALTH POLICY AND ETHICS

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