Consultation implications in context

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See all articles attached.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 case file study attached or detailed information on the current case under review. 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 evaluation(1)Should the staff encourage the daughter to inform her mother that she is sexually active?(2)Would knowledge regarding her daughter’s sexual activity influence the mother’s stance regarding disclosure?(3)Should the staff break confidentiality and inform the mother that her daughter is sexually active?(4)Should the staff encourage the mother to inform the daughter of both her and her daughter’s HIV status?(5)Does the daughter’s boyfriend have any rights in this situation? If so, what are they?(6)Based on the daughter’s age, does the mother have a right to not disclose the diagnosis to her daughter?(7)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?(8)Are there other approaches the staff can take? If so, what are they?(9)Is further information required in order for you to create an ethically sound suggested course of action?

American Psychological Association. (2010). Ethical principles of psychologists and code of conduct: Including 2010 amendments. Retrieved from http://www.apa.org/ethics/code/index.aspx

Amy D. Leonard, Christine M. Markham, Thanh Bui, Ross Shegog, & Mary E. Paul. (2010). Lowering the Risk of Secondary HIV Transmission: Insights From HIV-Positive Youth and Health Care Providers. Perspectives on Sexual and Reproductive Health, 42(2), 110–116.

Clum, G. A., Czaplicki, L., Andrinopoulos, K., Muessig, K., Hamvas, L., Ellen, J. M., & Adolescent Medicine Trials Network for HIV/AIDS Interventions (2013). Strategies and outcomes of HIV status disclosure in HIV-positive young women with abuse histories. AIDS patient care and STDs, 27(3), 191–200. https://doi.org/10.1089/apc.2012.0441

Eustace, R. W., & Ilagan, P. R. (2010). HIV disclosure among HIV positive individuals: A concept analysis. Journal of Advanced Nursing, 66(9), 2094–2103. doi: 10.1111/j.1365-2648.2010.05354.x

Gillard, A., & Roark, M. (2013). Older Adolescents’ Self-Determined Motivations to Disclose Their HIV Status. Journal of Child & Family Studies, 22(5), 672–683. https://doi.org/10.1007/s10826-012-9620-2

Horvath KJ, Weinmeyer R, & Rosser S. (2010). 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. AIDS Care, 22(10), 1221–1228. https://doi.org/10.1080/09540121003668078

Obermeyer, C. M., Baijal, P., & Pegurri, E. (2011). Facilitating HIV Disclosure Across Diverse Settings: A Review. American Journal of Public Health, 101(6), 1011–1023. https://doi.org/10.2105/AJPH.2010.300102

University of Arizona Global Campus. (n.d.). PSY699 Week 5 discussion case file [PDF]. https://content.bridgepointeducation.com/curriculum/file/e4df8669-3f07-4404-bbc8

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.

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

June 2011, Vol 101, No. 6 | American Journal of Public Health Obermeyer et al. | Peer Reviewed | Health Policy and Ethics | 1011

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

June 2011, Vol 101, No. 6 | American Journal of Public Health Obermeyer et al. | Peer Reviewed | Health Policy and Ethics | 1013

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

June 2011, Vol 101, No. 6 | American Journal of Public Health Obermeyer et al. | Peer Reviewed | Health Policy and Ethics | 1015

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

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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: [email protected]). 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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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, <http://www.houstontx.gov/

health/HIV-STD/1stQRT2009.pdf>, 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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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: [email protected]

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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: [email protected]

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

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.,

T
a
b
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.
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st
.

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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O R I G I N A L P A P E R

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: [email protected]

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 MotivationAmotivation

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

C O N C E P T A N A L Y S I S

HIV disclosure among HIV positive individuals: a concept analysis

Rosemary W. Eustace & Perla R. Ilagan

Accepted for publication 26 March 2010

Correspondence to R.W. Eustace:

e-mail: [email protected]

Rosemary W. Eustace PhD RN CFLE

Assistant Professor

College of Nursing and Health, Wright State

University, Dayton, Ohio, USA

Perla R. Ilagan PhD RN

Assistant Professor

College of Nursing and Health, Wright State

University, Dayton, Ohio, USA

E U S T A C E R . W . & I L A G A N P . R . ( 2 0 1 0 )E U S T A C E R . W . & I L A G A N P . R . ( 2 0 1 0 ) HIV disclosure among HIV positive

individuals: a concept analysis. Journal of Advanced Nursing 66(9), 2094–2103.

doi: 10.1111/j.1365-2648.2010.05354.x

Abstract
Aim. This paper is a report of an analysis of the concept of HIV disclosure.

Background. There is a growing interest among healthcare providers and researchers

in HIV disclosure as an effective HIV prevention and early disease management ini-

tiative. However, the concept still remains unclear. Conceptual clarity is important for

providing an expanded theoretical definition and understanding of attributes of HIV

disclosure. This information is useful in constructing better HIV disclosure measures

in HIV/AIDS nursing practice and research.

Data sources. A computer search of the following databases was conducted to capture

the meaning and processes of HIV disclosure among HIV-positive individuals:

PubMed, CINAHL and PSYCINFO. Only English language journals were used.

Publication dates of the literature review ranged from 1999 to 2009. The following key

words were used: HIV disclosure, self-disclosure, disclosure and serostatus disclosure.

Methods. The Walker and Avant (2005) concept analysis model (Strategies for

Theory Construction in Nursing, Pearson Prentice Hall, River, NJ, 2005) was used to

guide the analysis process, which was completed in 2009.

Results. The concept analysis revealed that HIV disclosure is a complex process

characterized by the following attributes: experiencing an event, communicating

something, timing, and contextual environment, protecting someone, relationship

status and improving something or being therapeutic. In addition, the process of HIV

disclosure varies across time.

Conclusion. The proposed HIV disclosure attributes provide nursing scholars and

researchers with new directions on how to reframe research questions, develop mea-

surement tools to reflect better the diversity and fluidity of the process of HIV

disclosure among HIV-positive individuals. Policy implications include the need to

develop approaches that protect individual and public rights.

Keywords: concept analysis, HIV disclosure, HIV/AIDS, nursing, theoretical models

Introduction

Since the inception of the HIV epidemic in the early 1980s,

numerous HIV prevention programs and public health

measures have been underway. Countries around the world

continue to adopt effective strategies to prevent new HIV

infections and improve the quality of life of HIV-infected

individuals and their sexual and social networks. New

2094 � 2010 The Authors. Journal compilation � 2010 Blackwell Publishing Ltd

J A N JOURNAL OF ADVANCED NURSING

strategies that promote early diagnosis and prevention of

HIV infection for HIV-positive individuals are now in place

(Hogben et al. 2007). Within these programs, there is also a

growing emphasis on HIV disclosure among HIV-infected

individuals as an effective prevention and early management

initiative (Pinkerton & Galletly 2007). HIV disclosure is

supported by empirical evidence indicating that a substantial

number of people report high levels of delayed or non-

disclosure by people living with HIV/AIDS (PLWH/A)

(Skogmar et al. 2006). Likewise, the evidence suggests that

HIV-positive individuals continue to engage in unsafe sexual

and drug-sharing behaviours without serostatus disclosure,

which hinders HIV prevention efforts (e.g. Simoni &

Pantalone 2004, Stirratt et al. 2006). To facilitate the

prevention of further HIV transmission and early access to

treatment, HIV/AIDS practitioners need to implement scien-

tific behavioural interventions that focus on HIV disclosure

among PLWH/A. However, to do so, it is important that

they develop a clear understanding of the concept of HIV

disclosure (Sullivan 2005, Greeff et al. 2008). Previous

personal experiences of working with HIV-positive clients

suggest that despite extensive training in HIV testing and

counselling and prevention, the majority of HIV/AIDS

counsellors/case managers are not clear about the underlying

attributes of the concept of HIV disclosure. As a result, it

becomes somewhat difficult to assist HIV positive clients

effectively through the disclosure process (Kalichman et al.

2007). In addition, most empirical studies on HIV disclosure

among PLWH/A subpopulations operationalize this disclo-

sure as simply a dichotomous ‘Yes’ or ‘No’ response (i.e.

disclosed/not disclosed), which does not capture the broader

meaning of the concept. Therefore, the aim of this paper is to

provide nurses with a basic understanding of the meaning

and usefulness of the concept of HIV disclosure by using the

Walker and Avant’s (2005) concept analysis approach.

Expectations of the analysis include proposing a theoretical

definition of HIV disclosure as well as raising awareness of

the attributes, antecedents and consequences of HIV disclo-

sure among nurses. This information will be useful in

constructing better HIV disclosure measures in advanced

HIV nursing practice and research.

Background

The concept of HIV disclosure has its roots in ‘self-

disclosure’. The concept of self-disclosure was originally

developed by Canadian Human Psychologist Sidney Jourard

(Jourard 1958, Jourard & Lasakow 1958), and was simply

understood as a communication approach that involved

sharing information about oneself. The concept has been

adopted in nursing and embedded in the humanistic commu-

nication theory developed by Dr Bonnie Duldt (Duldt 1991,

Duldt & Giffin 1985). According to the theory, self-disclosure,

trust and feedback are central tripods of the interpersonal

communication process. On the other hand, self-disclosure is

also viewed as a risky rejection in terms of telling how one

feels and thinks about certain life events (e.g. a diagnosis of

HIV/AIDS or cancer) (Duldt & Griffin). Unlike cancer,

self-disclosure of HIV/AIDS has enormous risks because of

the stigma that can occur due to blame, shame, fear

and scapegoating (Thorne et al. 2000). This makes the

HIV disclosure concept unique and at the same time

challenging.

Although several models of HIV disclosure have been

proposed, the majority offer a narrow perspective that does

not reflect the broader socio-economic and cultural perspec-

tive of the disclosure process (Zea et al. 2007). For instance,

some scholars have examined HIV/AIDS discourse in the

context of HIV-positive social relationships (Bairan et al.

2007), while others have focused on disease progression and

consequences (Serovich 2001, Serovich et al. 2008). The

disease progression theory suggests that some seropositive

individuals’ decisions to disclose their status occur when the

disease progresses to AIDS, because they can no longer hide

the disease or keep it secret. On the other hand, the

consequence theory suggests that an individual’s decision to

disclose their serostatus occurs after carefully analysing the

anticipated outcomes. Additionally, others have described

HIV/AIDS disclosure by examining the disclosure methods/

strategies (Serovich et al. 2005). For instance, Serovich et al.

(2005) developed a typology that depicted five primary

categories of HIV disclosure among men namely, point-blank

disclosure, indirect disclosure, stage-setting, buffering, and

seeking similar disclosure. Thus, it is apparent that the

validity of the theories and measures employed in HIV/AIDS

disclosure research raises further questions, making it difficult

for researchers and care providers to pursue potential clues

that are critical in supporting the disclosure needs of their

clients (Greeff et al. 2008).

Data sources

A computer search of the following databases was conducted

to find the meaning and processes of HIV disclosure

among HIV-positive individuals: PubMed, CINAHL and

PSYCINFO. Literature examining HIV disclosure from 1999

to 2009 was reviewed. The following key words were used in

the search: HIV disclosure, HIV self-disclosure, disclosure

and HIV serostatus disclosure. Papers describing the mean-

ing, uses, characteristics, antecedents, consequences, barriers,

JAN: CONCEPT ANALYSIS HIV disclosure

� 2010 The Authors. Journal compilation � 2010 Blackwell Publishing Ltd 2095

process and outcomes of HIV disclosure among HIV positive

individuals were included in the analysis.

Method

The Walker and Avant (2005) concept analysis model was

used to guide the analysis. The model has eight steps:

(1) selecting the concept, (2) determining the aims or purpose

of analysis, (3) identifying uses of the concept, (4) determin-

ing the defining attributes, (5) identifying a model case, (6)

identifying additional cases (e.g. alternative/borderline and

contrary case), (7) identifying antecedents and consequences

and (8) defining empirical referents. The first two steps have

already been covered in the introduction and background

sections above. The other steps are discussed below.

Results

Uses of self-disclosure and HIV/AIDS disclosure

The Merriam-Webster Online Dictionary (2010) describes

disclosure as simply an act or instance of disclosing or

making something known that was previously unknown or

concealed. The term disclosure has been used in the business

and medical literature as a policy tool to protect the public

and improve performance (Repetto 2005). In the medical

literature, disclosure is used to inform consumers about

healthcare issues such as medical errors and diseases/trau-

matic conditions (Bradley & Follingstad 2001, Webster et al.

2009). In nursing, self-disclosure has been used in relation to

therapeutic relationships, especially in mental health nursing

practice (Ashmore & Banks 2002). As a concept, it is defined

as self-awareness (Burnard & Morrison 1992, Newshan,

1998) and may be associated with either a loss (stressor) or

gain (opportunity of) (Chandra et al. 2003b). As an oppor-

tunity, an individual can increase their quality of life through

social, financial, emotional and behaviour gains. As a

stressor, disclosure may be associated with discrimination,

abandonment and stigmatization (Chandra et al. 2003a,

Kalichman et al. 2003). The above-mentioned outcomes of

self-disclosure of HIV serostatus have been conceptualized

through disease progression and consequence theories (Sero-

vich 2001). Empirically, however, these theories continue to

lack explanatory and predictive powers because they have

not been adequately tested among various HIV subpopula-

tions (Simoni & Pantalone 2004).

Thus, HIV disclosure can be defined theoretically as a

complex and multifaceted process of making a voluntary or

involuntary decision about whom to inform about one’s

serostatus, why, when, where and how. Individual factors

(such as self-esteem, self-efficacy, sex, age), relational factors

(e.g. family, partner and community–dyadic relationships)

(Serovich 2001, Simoni & Pantalone 2004) and cultural

factors are critical variables and need to be considered in this

process (Greeff et al. 2008, Mutchler et al. 2008). Theoret-

ical constructs such as perceived antecedents, type of

relationship and positive outcome/expectations about dis-

closing are also important (Sullivan 2005). The literature

describes some unique characteristics or attributes that make

up the concept of HIV disclosure among HIV-positive

individuals. These attributes are summarized in the following

section.

Attributes of HIV disclosure

In summary, the characteristics of HIV disclosure include: (1)

experiencing an event, (2) communicating something, (3)

timing, (4) contextual environment, (5) protecting someone,

(6) relationship status and (7) improving something or being

therapeutic.

Experiencing an event

Disclosure happens when a certain life event is experienced

that influences the feeling(s) or thought(s) of disclosing or not

disclosing it to others. In the case of HIV, the person is faced

with a diagnosis that is seen as shameful and life-threatening

and needs to decide how, when, where, what and to whom to

disclose or not to disclose.

Communicating something

Disclosures cannot happen if there is no communication.

Therefore, the attribute of communication in HIV disclosure

includes the act of telling someone about a life-threatening

and shameful disease that nobody is aware of or suspecting. It

includes the release of a burning issue (Winstead et al. 2002).

Others have defined this process as catharsis, or the oppor-

tunity to ventilate feelings by talking to someone (Derlega

et al. 2004). Making the decision to communicate is a diffi-

cult and personal process. The process of communicating a

sensitive topic such as HIV seropositivity is influenced by

individual and social factors. For the most part, HIV-positive

individuals who intend to communicate their serostatus may

actually decide not to disclose because they lack the strength,

motivation or will-power to do so (Sullivan 2005). This may

happen to people who have low self-esteem or low self-effi-

cacy. Other factors include race/ethnicity, gender and age

(Sullivan 2005), personal childhood experiences with family

secrets and parental silence (Lester et al. 2002), the mode of

transmission (Ko et al. 2007) and medium of communication

(Serovich et al. 2005). For instance, African American and

R.W. Eustace and P.R. Ilagan

2096 � 2010 The Authors. Journal compilation � 2010 Blackwell Publishing Ltd

Latina HIV-positive individuals are less likely to disclose their

status than their White counterparts (Sullivan 2005, Rice

et al. 2009). Moreover, research indicates that men who have

sex with men (MSM) tend to disclose their HIV status to

friends immediately after obtaining the test result, while

heterosexual men tend to disclose their seropositive status to

family members a few days after the test results are received.

Additionally, injecting drug users (IDUs) have been said to

have the most difficulties in disclosing HIV to others (Ko

et al. 2007). As for the medium of communication, point-

blank and direct disclosures have been the most commonly

used strategies (Serovich et al. 2005).

Timing

The timing of HIV disclosure refers to the social meaning of

when and why individuals decide to disclose their serostatus

to others. HIV-positive individuals may become more

accepting or open about their illness over time but struggle

when it comes to whom and when to tell (Winstead et al.

2002). Empirical evidence indicates that disclosure becomes

easier the longer someone has been living with HIV, because

they become more open and comfortable with the HIV status

or can no longer hide the symptoms (Serovich 2001,

Winstead et al. 2002, Batterham et al. 2005). For example,

the longer it takes to disclose, the more risky it might be in

terms of maintaining trusting relationships. When partners

feel betrayed, they are more likely to end the relationship.

Concerns over timing of disclosure and sexual activity,

however, are still unclear (Simoni & Pantalone 2004). How

does this work for HIV-positive individuals? Do they engage

in safer sex before or after disclosure? Surprisingly, delaying

disclosure may also be beneficial to HIV-positive individuals

because it may give them more time to know the other people

involved and thus anticipate possible reactions and conse-

quences to disclosure (Rutledge 2007).

Contextual environment

The contextual environment is critical in HIV disclosure/non-

disclosure. It describes the setting and potential contextual

factors under which disclosure is more or less likely to occur.

Seropositive individuals, their families and communities, as

well as their socio-cultural and political norms, constitute the

environment. If HIV stigma is present, HIV-positive indi-

viduals are less likely to disclose (Wouters et al. 2009).

Conversely, disclosure can occur only if the person feels

secure, in control and in a comfortable environment

(Rutledge 2007). For example, personal disclosure is more

likely to occur in the person’s own home rather than that of

their sexual partner’s because this affords a greater sense of

security. Silent communications through the presence of other

evidence of seropositivity such as medications (e.g. taking or

displaying medications in the open), brochures (support

groups) are more likely to occur at home and hence facilitate

disclosure. For some individuals, however, this may also

become difficult to accomplish and anonymous disclosure

over the internet or through another person is desirable,

because the process is easier and rejection is less obvious

(Rutledge 2007). However, anonymous sexual contexts such

as public sexual venues may also affect disclosure because of

fear of being detected (Simoni & Pantalone 2004). Other

contextual factors may include substance abuse, income and

other socio-cultural factors (Simoni & Pantalone 2004). As

far as taking highly active retroviral treatment (HAART) is

concerned, there is a possibility that this may influence the

process of disclosure in both negative and positive ways. This

finding, however, is not conclusive (Klitzman et al. 2004).

Protecting someone

HIV-positive individuals choose to disclose/not disclose their

status because they feel a sense of responsibility to protect

their partners and social networks (personal vs. shared

responsibility) (Jeffe et al. 2000, Winstead et al. 2002,

Sullivan 2005), and in some sense to protect themselves

(Gorbach et al. 2004). This can be described as another-

focused reason (Chandra et al. 2003a). This sense of pro-

tection can occur in many different ways. Some may choose

to go ahead and tell their partners about their status so that

they can decide what they want to do. To some, this is a

moment of fulfilling the need to educate (Emlet 2008). Others

may realize that their partners have the right to know but

choose not to disclose because they believe that, as long as

they have protected sex, the partners do not need to know

(Winstead et al. 2002). For some individuals, serosorting may

be another option (Wong et al. 2009). This is a new strategy

that involves commitment and checking whether a partner is

indeed positive before sexual encounters. If a partner is per-

ceived as HIV-positive, then the seropositive individual is

more likely to disclose. As for self-protection, if people con-

sider themselves to have a low viral load (which may reduce

possibility of transmission), they are less likely to disclose

(Gorbach et al. 2004, Simoni & Pantalone 2004).

Relationship status

The disclosure process to others has its own patterns and

limitations. The attribute of relationship status is character-

ized by a selective disclosure process to preserve privacy.

Some HIV-positive individuals are secretive about who they

disclose to and may not disclose to everyone (Kalichman

et al. 2003). Often, HIV-positive people will disclose their

status to some friends and family members, healthcare

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� 2010 The Authors. Journal compilation � 2010 Blackwell Publishing Ltd 2097

workers, employers, others in the community and/or some-

times to their partners. As for sexual partners, disclosure is

more likely to occur in longer romantic relationships than

casual relationships (one-night stands, anonymous partners,

group scene, etc.) (Batterham et al. 2005, Rutledge 2007).

Most people feel that if they have a romantic relationship

they would be more inclined to disclose than when they are in

a casual sexual relationship. For some individuals, however,

disclosure may be a strategy to excusing oneself from getting

to know another person, especially in situations where there

is lack of attraction (i.e. also known as ‘cop outing’) (Rutl-

edge 2007).

Furthermore, family and friendship functioning is critical

in the disclosure process. In many cases, family size or social

network densities are not statistically significant predictors of

HIV disclosure (Kalichman et al. 2003). There has been a

consistent pattern of disclosure which suggests that women

are more likely to disclose than men (Kalichman et al. 2003,

Shaffer et al. 2001, Wouters et al. 2009). In addition,

disclosure is more likely to occur among friends, mothers

and sisters than fathers and brothers (Kalichman et al.

2003). Cultural differences are also vital in selective disclo-

sure, with HIV-positive individuals being more likely to

disclose to friends in the West than in countries such as those

in Africa and India, where family is most important. For

instance, Kalichman et al. (2003) found that friends were

disclosed to most often and were perceived as most

supportive among people in the United States of America

(USA). Likewise, the literature on disclosure to children

reveals unique patterns, with more disclosure among chil-

dren aged 10 years and older (Lester et al. 2002, Asander

et al. 2009). Other relational factors affecting HIV disclo-

sure/non-disclosure include number of sexual partners and

sexual orientation. HIV-positive individuals who have a

greater number of sexual partners are less likely to disclose,

compared to those with fewer partners (Sullivan 2005). In

addition, homosexual men have been reported to disclose

more than bisexual and heterosexual individuals (Sullivan

2005). These findings, however, are not conclusive because

of non-representative samples (Batterham et al. 2005). In

terms of sexual orientation, heterosexual individuals, in

particular women face unique challenges associated with

HIV disclosure. Some of these may be influenced by their

roles in society and the power imbalance within their

relationships. Semple et al. (1993) identified stressors in a

sample of 31 HIV-positive, mostly White, heterosexual

women with no reported history of intravenous drug use.

The researchers identified self-disclosure of HIV status to

children, concern about having infected children, caring for

an infected child, and making alternative arrangements for

caring for children as important stressors in the lives of

women who had children. In addition, race/ethnicity has

been found to play a key role in HIV disclosure. A study by

Elford et al. (2008) indicated that Black African heterosexual

men and women were less likely to tell their current partners

about their HIV infection than White or ethnic minority gay

men. Moreover, African American and Latino men leading

double lives by engaging in both heterosexual and homo-

sexual relations are less likely to disclose their HIV status to

female partners, and are also more likely to engage in

unprotected sex (Mutchler et al. 2008).

Improving something or being therapeutic

The therapeutic effect of disclosure has been commonly cited

as a reason for disclosing serostatus (Chandra et al.2003a).

Disclosure to significant others is important for coping with

HIV/AIDS and gaining social support among HIV-positive

individuals (Chandra et al. 2003a, Greeff et al. 2008).

Empirical evidence suggests that disclosure to significant

others can help increase social support as well as initiation

and adherence to HIV treatment and medications (Serovich

2001, Winstead et al. 2002, Stirratt et al. 2006). Disclosure

to friends has been reported to be most likely and friends

have been found to be very supportive (Kalichman et al.

2003). In addition, disclosures to mothers and sisters have

been reported more often than fathers and brothers, and are

perceived as the most supportive family members. The

extended family, on the other hand, is viewed as more

supportive than all immediate family members with the

exception of mothers (Kalichman et al. 2003).

Cases

Model case

Walker and Avant (2005) suggest that providing a model case

as an example of the concept will demonstrate all its defining

attributes. The following is a constructed example of a model

case. Patient A saw an advertisement about a local commu-

nity health project offering free HIV testing and decided to

get a test. She was somehow not very sure if she was at risk,

but knew that she had experienced unprotected sex with

multiple partners. After taking the test she was given a pre-

liminary positive result, and this was later confirmed at the

local health department. With the help of the counsellor,

Patient A decided to disclose her status to her mother

6 months later after learning her diagnosis. She disclosed to

her during a nurse practitioner follow-up visit. She believed

that her mother would be more accepting and supportive,

and that she deserved to know more about HIV transmission,

prevention and management.

R.W. Eustace and P.R. Ilagan

2098 � 2010 The Authors. Journal compilation � 2010 Blackwell Publishing Ltd

Alternative/borderline case

An alternative case is designed to demonstrate a situation

where some of the defining attributes antecedents or conse-

quences are present. Patient B was admitted to the hospital

with high fever, body malaise and vomiting. He had been out

of work for a while because of being ill. He had lost a lot of

weight, as he had not been eating well. He had been involved

in unsafe sexual activity and had being speculating that he

might have HIV. He had told his best friend J because he was

very accepting and non-judgmental. His friend requested that

he get tested. It took him a while to finally do so. The test

result indicated that he was HIV-negative. Patient B is an

example of an alternative case because he possessed some of

the attributes of HIV disclosure, with exception that he was

not HIV-positive, and thus did not need to disclose anything

(i.e. HIV status).

Contrary case

Walker and Avant (2005) defines a contrary case as a clear

example of what is ‘not the concept’. Patient C is admitted

to the hospital with high fever, fatigue and loss of appetite.

He has been experiencing unexplained weight loss in the last

2 months. He has now officially learned that he has cancer.

He does not want to tell his wife about the diagnosis but

shows an interest in telling his boss at work. He believes

that his boss is very supportive and will make sure he

continues to receive health insurance coverage. This case

demonstrates some attributes of disclosure, but not HIV

disclosure.

Antecedents of HIV disclosure

The antecedents of HIV disclosure can be summarized in two

categories, namely before and after HIV diagnosis, and may

include individual, familial, community and social factors.

Post-diagnosis factors may include disease acceptance and

desire to protect others and gain support (Greeff et al. 2008).

Death of a loved one, partner or child has also been reported

as a factor leading to disclosure (Greeff et al. 2008). Some of

the determinants of disclosure among HIV positive individ-

uals include the act of maintaining secrets because of age-

related factors, social economic status (SES), the need of

privacy and the time-lag between knowing about HIV status

and deciding to disclose (Wouters et al. 2009). It has been

reported that HIV-positive individuals who disclose are on

average older, higher in SES and aware of their HIV status

longer than those who have not told their sexual partner(s)

(Demas 2000). Denial and breaching confidentiality may be

other reasons for not disclosing, as well as fear of negative

consequences for the family (Greeff et al. 2008). Another

important antecedent of disclosure is the presence of

community support initiatives. In their study to determine

the impact of a community support initiative on disclosure to

relatives, Wouters et al. (2009) concluded that the safe

environment created by the support of community health

workers or HIV support groups reduced fear of stigmatiza-

tion and rejection and encouraged disclosure among PLWH/

A. These findings support consequence theory as an expla-

nation of whether an individual decides to continue keeping

the secret or to disclose by considering the cost and rewards

of the decision (Serovich 2001). Overall, we can conclude

that, depending on the relationship target, the perception of

HIV-related stigma shapes people’s positive or negative

concerns about what might happen if they disclose (Derlega

et al. 2004). Other factors may include knowledge of the

disease (Skogmar et al. 2006), race/ethnicity (Fekete et al.

2009), and quality of communication, family functioning,

gender and sexual orientation (Lester et al. 2002).

Consequences of HIV disclosure

The consequences of HIV disclosure may be categorized as

either negative or positive in relation to the family, sexual

partners, friends and community. Negative consequences

include anxiety because of an uncertain outcome. HIV

disclosure generates fear of rejection for sex, loss of

romance, separation, divorce, and negative labels such as

handicap or sickness, as well as stigma and death sentence

(Skogmar et al. 2006, Calin et al. 2007, Rutledge 2007,

Wong et al. 2009). HIV disclosure is regarded as one of the

triggers of HIV stigma (Sandelowski et al. 2004, Greeff et al.

2008). Other negative consequences may include loss of

social support and abandonment assault/violence and impris-

onment. For instance, many states in the USA now consider

HIV transmission associated with non-serostatus disclosure

as ‘criminal transmission’. An individual can be taken to

court if their sexual partners or social networks think that

they contracted the disease because the individual did not

disclose their status (Simoni & Pantalone 2004). Moreover,

HIV disclosure to children may result in problem behaviour

and negative family functioning, especially among adoles-

cents (Li et al. 2007). Potential negative outcomes for

children include poor academic achievement, lack of pro-

social behaviours (e.g. cooperation, helping, trust), sexual

risk-taking, substance abuse (Delaney et al. 2009), fear of

the unknown, fear of death or separation, and denial or loss

of social relationships (Winstead et al. 2002). HIV disclosure

in the community has also been reported to result in denial

due to distrust toward seropositive individuals who disclose

because of their physical appearance (not thin/ill) and the

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� 2010 The Authors. Journal compilation � 2010 Blackwell Publishing Ltd 2099

thought that they are doing this for monetary gain (Greeff

et al. 2008).

As for positive consequences, disclosure is commonly

associated with reports of consequent safer sexual behaviour

and greater social support. It has been found that individuals

who disclose are more likely to report more frequently or

always using condoms, reducing the number of sexual

partners and/or becoming monogamous, increased social

support, with families providing the most support (Demas

2000, Wong et al. 2009). Other possible variables in relation

to the benefits of mothers’ disclosure to their children include

reduced worry, increased parental self-efficacy and improved

parent-child relationships (Winstead et al. 2002, Li et al.

2007). Disclosure may also lead to improved medication

adherence (Mellins et al. 2002).

Empirical referent

Following the model case, it is clear that empirical referents

should incorporate assessment of HIV testing and diagnosis,

timing of testing and disclosure, communication patterns and

types, context of disclosure, relationships types and social

support. These factors, together with the antecedents and

consequences, yield useful information that can offer new

research directions in HIV disclosure, in particular instru-

ment development.

Discussion

The proposed attributes and definition of HIV disclosure

were developed based on empirical evidence and earlier

efforts to understand the HIV disclosure process among HIV

positive individuals. The analysis offers a conceptual map for

further research to develop a middle-range theory of HIV

disclosure. Although the research evidence reviewed for this

analysis has generated many important and consistent find-

ings on some aspects of disclosure, such as the relational and

therapeutic (support) factors, many gaps remain. There is a

need for more data about HIV disclosure in order to develop

a more inclusive model. Each of the potential factors within

the proposed major categories (attributes, antecedents and

consequences/outcomes) needs further exploration.

Moreover, majority of the findings in this analysis are

based on cross-sectional and comparative research designs,

which yield limited information about the process of

disclosure over time and across various HIV subpopulations.

In addition, it is imperative to note that very few researchers

have examined HIV disclosure using randomized controlled

trials (Serovich et al. 2009). As a result, it is still difficult to

understand the complex patterns and consequences of

disclosure on HIV-positive individuals’ well-being. There-

fore, any new theoretical consideration of the process of

HIV disclosure should address relationship and therapeutic

needs, as well as the timing, protective, communicative and

contextual factors influencing disclosure. For instance,

future researchers should compare how HIV-positive indi-

viduals and their sexual/social networks perceive the impact

of HIV disclosure on their relationships (Winstead et al.

2002).

Conclusion

The major challenge offered in this analysis concerns how

scholars can enrich theoretical conceptualizations of HIV

disclosure. The concept has major implications for advanced

HIV nursing practice through the application of various

What is already known about this topic

• A significant amount of HIV/AIDS prevention
literature provides support for HIV disclosure among

HIV-positive individuals.

• Healthcare providers are encouraged to be aware of
any implications associated with HIV disclosure in

order to effectively support and meet the needs for

people living with HIV/AIDS.

• There literature does not offer a clear understanding
of the concept of HIV disclosure as it reflects the

complex realities of HIV positive individuals.

What this paper adds

• A theoretical definition of the concept of HIV disclosure.
• Major attribute categories of HIV disclosure are:

experiencing an event, communicating something,

timing, contextual environment, protecting someone,

relationship status and improving something or being

therapeutic.

• The process of HIV disclosure varies across time.

Implications for practice and/or policy

• Develop a HIV disclosure measurement tool for
seropositive individuals.

• Offer effective services for people living with HIV/AIDS
utilizing the defining attributes, antecedent and

consequences of HIV disclosure.

• Train health care providers on the process of HIV
disclosure assistance.

R.W. Eustace and P.R. Ilagan

2100 � 2010 The Authors. Journal compilation � 2010 Blackwell Publishing Ltd

theories such as the humanistic communication theory and

interpersonal theories. The analysis offers nurses a guiding

tool on how to reframe research questions and practical

activities in order to reflect the diversity and fluidity of the

process of disclosure among people with HIV. Both qualita-

tive and quantitative research designs and methods should be

used in shedding light on the complex patterns of relationship

changes and interactions that can explain the process of HIV

disclosure. Socio-cultural norms and attitudes about HIV

should be considered and researched to further the under-

standing of HIV disclosure. Randomized trials, longitudinal

studies and multilevel models that evaluate HIV disclosure

interventions are also valuable designs in this process. The

key attributes of HIV disclosure offer nurses a base for

developing multiple level counselling and psychosocial inter-

ventions to help support HIV-positive individuals through the

disclosure process. Policy implications include the need to

develop better assessment, referral and follow-up approaches

that protect the rights of individuals and the public.

Funding

This research received no specific grant from any funding

agency in the public, commercial, or not-for-profit sectors.

Conflict of interest

No conflict of interest has been declared by the authors.

Author contributions

RWE and PRI were responsible for the study conception and

design. RWE and PRI performed the data analysis. RWE and

PRI were responsible for the drafting of the manuscript. RWE

and PRI made critical revisions to the paper for important

intellectual content. PRI supervised the study.

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JAN: CONCEPT ANALYSIS HIV disclosure

� 2010 The Authors. Journal compilation � 2010 Blackwell Publishing Ltd 2103

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

Gretchen A. Clum, PhD,
1

Lauren Czaplicki, MPH,
2

Katherine Andrinopoulos, PhD,
1

Kathryn Muessig, PhD,
3

L. Hamvas, MPH,
4

Jonathan M. Ellen, MD,
5

and the Adolescent Medicine Trials Network
for HIV/AIDS Interventions

Abstract

Young women with HIV and histories of physical and/or sexual abuse in childhood may be vulnerable to
difficulties with disclosure to sexual partners. Abuse in childhood is highly prevalent in HIV-positive women,
and has been associated with poorer communication, low assertiveness, low self worth, and increased risk for
sexual and other risk behaviors that increase the risk of secondary transmission of HIV. HIV disclosure may be
an important link between abuse and sexual risk behaviors. Qualitative interviews with 40 HIV-positive young
women with childhood physical and/or sexual abuse were conducted; some women had also experienced adult
victimization. Results suggest that HIV-positive women with abuse histories use a host of strategies to deal with
disclosure of HIV status, including delaying disclosure, assessing hypothetical responses of partners, and de-
termining appropriate stages in a relationship to disclose. Stigma was an important theme related to disclosure.
We discuss how these disclosure processes impact sexual behavior and relationships and discuss intervention
opportunities based on our findings.

Introduction

Advancements in antiretroviral drug treatment haveenabled persons living with HIV/AIDS (PLWHA) to live
longer, healthier lives with increased opportunity for engag-
ing in intimate relationships. An ongoing challenge to sec-
ondary prevention of HIV is understanding and intervening
with factors influencing continued engagement in unpro-
tected sex with new and existing partners.1–3 HIV-positive
women with childhood abuse histories, including both
physical and sexual abuse in childhood, have been identified
as a particularly vulnerable population, with higher rates of
unprotected sex, greater numbers of partners, and additional
health risk behaviors, such as substance use, and poorer ad-
herence than their counterparts without abuse histories.4–9

One potentially relevant mechanism linking abuse and en-
gagement in unprotected sex is disclosure of HIV status.
Women with childhood abuse histories report less assertive
behavior, greater interpersonal distress, increased shame, and
more difficulty with interpersonal communication.10–14

Young women with HIV diagnosis and prior experiences of

physical and/or sexual abuse in childhood may be particu-
larly vulnerable to difficulties disclosing their HIV status to
partners, which may play an important role in risk behaviors.

Disclosure has been associated with greater adherence to
HIV care and regimens, and improved mental and physical
health.15 Several factors appear to influence disclosure of HIV
status. Persons living with HIV or AIDS who report low self-
efficacy to disclose their status are more likely to never or
infrequently disclose their HIV status to a sexual partner.16,17

HIV stigma has also been shown to be negatively related to
the decision to disclose across studies.18 Exposure to height-
ened levels of HIV stigma are associated with increased feelings
of negative self-image—including shame and guilt—and a
subsequent decrease in confidence to disclose HIV status.19–21

PLWHA are more likely to disclose their HIV status to
primary sex partners compared to casual partners22–24 and
several studies have found higher rates of disclosure in
established relationships lasting longer than 6 months.3,25

Frequency of contact with an individual, and female gender
has also been shown to be associated with time to disclosure
in women with HIV.26 The association between relationship

1Tulane University School of Public Health and Tropical Medicine, New Orleans, Louisiana.
2The Louisiana Public Health Institute, New Orleans, Louisiana.
3Johns Hopkins School of Public Health, Baltimore, Maryland.
4Washington University, St. Louis, Missouri.
5Johns Hopkins School of Medicine, Baltimore, Maryland.

AIDS PATIENT CARE and STDs
Volume 27, Number 3, 2013
ª Mary Ann Liebert, Inc.
DOI: 10.1089/apc.2012.0441

191

length and status disclosure, and differences in status dis-
closure by partner type are potential ways PLWHA attempt to
mitigate the social risk of revealing one’s serostatus.27,28

Strategizing disclosure may be particularly important for
women with abuse histories who may already have experi-
enced stigma and shame due to the abuse, and who may be
more likely to internalize feelings of low self-worth or feelings
of powerlessness.29,30

HIV-positive women with abuse histories have numerous
abuse-related sequelae that are relevant to disclosure of HIV
status and sexual behaviors. For example, a qualitative study
of women with sexual abuse histories included reports that
consideration of disclosure of abuse was associated with
feelings of powerlessness, fears of additional victimization
ensuing, and thoughts related to their own responsibility
(self blame) for the abuse.31 Similar to the difficulty of dis-
closing abuse status, women with abuse histories may have
fears or difficulty disclosing their HIV status to partners.
This hypothesis is underscored by the fact that discomfort
with intimacy, and avoidance of intimacy have also been
described in HIV positive women with abuse histories.10

Other studies report emotional distress linked to abuse in
HIV positive women, which may also play a role in disclo-
sure and sexual behavior, for example, PTSD related
avoidance may heighten the likelihood that women will not
disclose HIV status.10

Research has shown that women with abuse histories are
more likely to engage in HIV risk behaviors relevant to both
primary and secondary transmission, including higher rates
of unprotected sex and an increased likelihood of having
risky sexual partners.10,12,32 Research also demonstrates that
women with an abuse history are less likely to successfully
negotiate condom use than those without an abuse history,
with this effect stronger for minority women.8,33 Women with
abuse histories have also been shown to engage in less sexual
communication in general, which in turn has been identified
as an important mediator between abuse and sexual risk be-
havior.4,34 Sexual communication specific to sexual history, as
well as condom use, has demonstrated strong associations
with condom use.35 Thus, in HIV-positive populations, dis-
closure of sexual history, including HIV status, may be an
important factor in condom use and may be particularly
challenging for those women with abuse histories with poorer
communication skills and more abuse-related distress. How-
ever, while several studies have demonstrated increased con-
sistency of condom use as a consequence of disclosure,36–38

other studies show inconsistent condom use after disclosure
within sexual partnerships.2,3,39 40

Given the potential vulnerability of women with abuse
histories to having greater difficulty with disclosure through
abuse-related sequelae such as low assertiveness, increased
shame, poor self worth, and powerlessness, and the increased
potential for stigma, investigation of disclosure in this popu-
lation is needed. The aims of this study are to explore dis-
closure strategies in young HIV-positive women with
histories of childhood sexual and/or physical abuse, examine
factors influencing those strategies, and to examine outcome
associated with disclosure. Greater understanding of the dy-
namics of disclosure communication in young women with
abuse histories may provide targets for intervention to facil-
itate status disclosure or inform strategies for communication
in the absence of disclosure that will reduce the likelihood of

unprotected sex and reduce risk for secondary transmission of
HIV in this high risk group.

Methods

The specific methods of our interview approach and inter-
view development are described in detail in Clum and col-
leagues.10 We utilized a naturalistic, inductive approach to
explore the experience of sexual and physical abuse on the
lives of young HIV-positive women. We adapted the method
of the Life Story Interview,41 using audio-recorded one-on-one
in-depth interviews. Descriptive demographic data and trauma
related symptoms were also assessed. Saturation was deter-
mined by consensus of the primary interviewer and authors
who reviewed transcripts as interviews were completed.

Participants

Young women with behaviorally acquired HIV were re-
cruited from three Adolescent Trials Network Sites (ATN) in
Miami, New York City, and Philadelphia. During enrollment,
all young women attending the clinic were approached with
information about the study. Forty women met the inclusion
criteria of age from 18 to 24 years, a reported history of
physical or sexual abuse prior to the age of 18, and hetero-
sexual sexual activity in the past 4 months, defined as vaginal
or anal sex. We stratified recruitment to include substance
users, with the result that 23 of 40 (57.5%) participants re-
ported greater than minimal use of alcohol, marijuana, or
other illicit drugs in the last 4 months.

Study participants received study information from nurse
coordinators during a clinic visit; interested participants gave
informed consent for eligibility screening. Of 84 women ap-
proached for the study, 8 women were not interested or left
care prior to screening, thus a total of 76 women completed
the screen. Of these, 34 were ineligible based on study inclu-
sion requirements and two declined to participate. Interviews
were scheduled within 60 days of initial contact, and con-
ducted by one of three trained interviewers.

Interviews lasted from 60 to 90 min and began with a semi-
structured interview reviewing abuse events, age and fre-
quency of abuse, PTSD symptoms, and sexual behaviors,
followed by the interview based on the Life Story Interview.
All interviewers were trained to administer the interview and
be sensitive to psychological issues during the course of the
interview. The primary interviewer was a trained Adolescent
Medicine physician unaffiliated with the clinics. Additional
interviewers included a clinical psychologist and a doctoral
level graduate student in public health proficient in qualita-
tive research methods, neither of whom were professionally
affiliated with the clinics. All participants were debriefed re-
garding potential psychological reactions to the interview,
and were made aware that assistance was immediately
available at the clinic site, or would be available if the need
arose later. All young women were also provided with re-
ferrals for care within the community in addition to clinic
contacts. Interviews were transcribed word for word and the
original recordings were destroyed. Interviews were re-
viewed by three authors as received. All participants received
compensation for time, transportation, and child care, as de-
termined by their local site standards. Approval from each
study site’s and the first authors Institutional Review Board
was obtained.

192 CLUM ET AL.

Measures

Abuse. Participants were assessed for abuse histories
prior to the age of 18 years. A modified version of a stan-
dardized traumatic event assessment method42 utilized in the
National Survey of Adolescents43 was used. Abuse was de-
fined by endorsement of at least one behaviorally specific
description of an event of physical or sexual abuse occurring
prior to age 18. Examples of specific items include: ‘‘Has a boy
or man ever put his penis inside your vagina or rear end or
inside your mouth when you didn’t want them to?’’ and, ‘‘In
your lifetime, has anyone, including family members or
friends, ever attacked you with a gun, knife, or some other
weapon, regardless of whether you ever reported it or not?’’

Post-traumatic stress disorder assessment. PTSD
symptoms were assessed with an interviewer administered
Posttraumatic Diagnostic Scale44 based on the DSM-IV diag-
nostic criteria. The scale provides a severity score (17 items)
and assessment of functional impairment (9 items yes/no) in
the past month. Item anchors ranged from 0 (Not at all or only
1 time) to 3 (5 or more times a week/almost always). The PDS
has demonstrated high internal consistency, test-retest reli-
ability, good sensitivity and specificity, and diagnostic
agreement with the Structured Clinical Interview for DSM-IV-
TR (SCID).

The Life Story Interview. A modified version of the Life
Story Interview41 was used to guide the interview. Partici-
pants identified different life chapters and followed up these
chapters with details regarding their significant life events. A
question guide with probes in areas such as the impact of
abuse, coping, and sexual behavior was available to inter-
viewers to facilitate the discussion and encourage elaboration
on certain themes and topics as interviews progressed. These
themes were chosen based on prior literature examining
abuse and its sequelae in HIV positive and nonpositive
women 8,45,46

Analyses

Grounded theory was utilized to guide our analysis.47 The
analysis process included conventional and directed content
analysis.48 Each transcript was reviewed in its entirety. Codes
were developed to capture concepts that were important to
the research questions. Transcripts were then broken down
into text segments that represented an important domain,
concept, or theme, labeled with the appropriate code49 and
catalogued using Atlas.ti 5.0 software.50 One primary coder,
not affiliated with the interviews or clinics, performed all the
coding. A second coder reviewed the coding scheme and co-
ded 25% of the interviews. A minimum of 80% inter-rater
reliability was achieved; any discrepancies were reviewed by
three authors of the study and discussed until agreement was
obtained. Codes were clustered based on overlapping con-
cepts. The relationship among codes and important themes
emerging through the clustering of concepts was discussed
among two of the co-authors. Identified themes were syn-
thesized for presentation. Results are focused on the themes of
sexual communication including disclosure, condom use ne-
gotiation, and factors influencing these themes. Segments
taken directly from interview transcripts are included as
illustrations of how the theme is expressed by participants.

Results

Demographics and abuse history

Demographic and behavior data are presented in Table 1.
Young women were between the ages of 18 and 24 years.
Thirty-five of 40 participants were Black (87.5%), 5 reported
‘‘other’’ status. Two of 40 women (5%) indicated they were of
Hispanic ethnicity. Thirty five percent reported they were
currently working, 45% reported they were in school, and
45% reported they were in a long-term relationship of 1 year
or more. A detailed report of participants’ trauma exposure
and symptoms is available in Clum et al.10 Briefly, young
women reported histories of sexual (75%) and physical (80%)
abuse histories, with 55% reporting the occurrence of both
physical and sexual assault. Post-traumatic stress disorder
symptoms were, on average, in the moderate to severe range
as assessed by the PDS (20.75, SD 10.18) and the impact of
symptoms across several life areas were reported, including
the impact on sexual relationships (67.5%), general life satis-
faction (57.5%), family (52.5%), and friend (50%) relation-
ships, and leisure activities (45%). Unprotected sex in the past
6 months was reported by 17 of 39 women (42.5%). Women
reported a range from 0 to 50 partners, 2.5% (n = 1) reporting 0,
57.5% reporting 1, 20% reporting 2, 20% reporting 3 or more.

Overview of results

Results are organized by themes and subthemes that include
(1) disclosure strategies, with subthemes of (a) disclosure
avoidance/delay, and post delay disclosure strategies, (b)
strategies used to disclose after delay occurred; (2) relationship
factors influencing disclosure with subthemes of (a) intimacy/

Table 1. Demographic and Sociobehavioral
Variables in Young HIV-Positive Women (N = 40)

Variable Percent Mean (SD)

Employed 35.0
In school 45%
Long-term relationship 45%

Race/ethnicity
Black 87.5
Hispanic 5.0
Other 12.5

Child abuse > 18 years
Sexual 75%
Physical 80%
Both 55%

PTSD symptoms 20.75 (10.18)
Impact of PTSD

Sexual relationships 67.5
General life satisfaction 57.5
Family relationships 52.5
Friend relationships 50.0
Leisure activities 45.0

Recent sexual partners
0 2.5
1 57.5
2 20.0
3 or more 20.0

Unprotected sex last 6 months 42.5
Recent substance use 57.5

HIV DISCLOSURE AND ABUSE 193

timing, (b) anticipated partner reactions, (c) stigma, (d) emo-
tional costs, and (e) moral obligations. Finally, themes around
(3) partner reactions to disclosure and (4) links between dis-
closure and condom use are discussed.

Disclosure strategies

Disclosure avoidance/delay. The desire to avoid or delay
disclosure of HIV status among study participants was com-
mon and influenced by myriad personal and relationship
factors that led to decreased communication regarding HIV
status. One young woman, with a reported history of both
childhood sexual and physical abuse, had a difficult time ac-
cepting her own HIV status. This impacted her decision to not
disclose to her partner of 3 years that she was HIV positive.
She said, ‘‘He doesn’t know yet, I have to tell him, so–. I know.
I told you that I’m a quiet person. And plus, I don’t think
about it. In my eyes, I don’t have it.’’

Several other women felt that their HIV status was a private
matter, one that was only shared with select family members
and health care providers. Another woman, who selectively
disclosed to some partners but not all, struggled with what
she saw to be the moral issue of disclosure, ‘‘I would never
purposely look for people to just, you know, ‘I’m going to give
this to as many people as I can,’ but if I’m in a relationship
with someone, and I don’t know how to address the situation,
I normally ignore it.’’ In these situations, avoidance plays an
important role in the disclosure process, making it difficult for
young women to communicate with partners.

Other women avoided or delayed disclosure out of a
concern that disclosure could result in loss of their partner.
One participant stated: ‘‘But the thing that really was both-
ering me was that how I’m going to tell the person that I
really love without him wanting to leave.’’ This young
woman felt that disclosure could result in termination of her
relationship, and because of her investment in ‘‘really lov-
ing’’ him, felt the risk of disclosure was greater than the
benefits of disclosure. Another participant delayed disclo-
sure until she was sure of the strength of her partner’s feel-
ings. ‘‘But when I tell them, I find it easier to wait until they
already fall in love with you. That’s what it is. Because if
they’re not, then I don’t know what they would do. But if I
really like them, then I would rather for them to be already in
love with me before I tell them.’’ In these situations, the in-
tensity of feeling or love for a partner drives these women’s
decision to ultimately disclose their HIV status.

Post delay strategies. Among women who delayed dis-
closure, patterns of delay were influenced by several factors.
For example, some women negotiated their delay in disclosure
by not fully expressing the truth about the timing of their HIV
diagnosis. As one woman explains, ‘‘I was in a relationship
with him for a year prior to finding out. So how was I going to
tell him? I said, ‘you gave me HIV.’ No he didn’t. I know he
didn’t. And he know he didn’t, but he went and got tested
anyway.’’ Similarly, another young woman described: ‘‘And
then the second guy, I didn’t tell him immediately, but when I
finally told him, I told him as if I had just found out.’’ These
women adopted a strategy to address disclosure that allowed
them to disclose their status but also allowed them to withhold
information from their partner, in this case timing of HIV di-
agnosis, that they were not comfortable communicating.

Relationship factors

Intimacy/timing. Several women discussed the effect of
contextual factors within a relationship on their decision to
disclose, such as how they perceived their relationship with a
current partner would develop. For example, one woman
based her decision to disclose on both her perceived future
with her partner and whether her partner potentially got sick
in the immediate future. ‘‘Depends, if I think that we’re going
to be together for awhile, then I will say something to him. But
if I don’t think we’re going to be together for awhile, then I’ll
probably just [not]. Not unless he went to the doctor or
something and something was wrong with him, then I would
explain to him, but now I wouldn’t.’’ Another woman said
that she did not expect to have to disclose her status saying ‘‘I
don’t know. That’s the last thing, I won’t ever be close to
nobody.’’ The stage of the relationship and level of intimacy
were thus important to disclosure.

Anticipated partner reactions. Women reported that they
would gauge partner reactions based on hypothetical situa-
tions involving HIV. One woman described how she expected
to handle disclosure, ‘‘Oh, [if it is] the right person for me to
tell my business to like that. If I see that it’s going somewhere,
then I’ll just sit down and tell him. And I’ll talk to him. First,
I’ll like figure out what you think about it. I ain’t going to
come out and say, okay, yeah, you know, but first give an
opinion on what you think. From that, I’ll just figure out what
I’ll do.’’

Another woman similarly explained her strategy for find-
ing out how a partner might react to knowing she had HIV. As
one woman explains: ‘‘Well, when the subject of sex would
come up, my partners, the guy will usually talk about, oh,
they don’t want to catch anything..We start talking about it,
and then I will be like, ‘Oh, what if you.’ I remember telling
my way of saying it, ‘Well what would you do if I was sick?’
And they would be like, well, they would say this and that but
they never change their words and they completely wouldn’t
want to like deal with it. So I’m like ‘Okay.’ ’’

Another woman employed a similar strategy: ‘‘It’s hard.
You know, we watch shows. If it comes on, I’ll be like, ‘How
would you react if-?’.I asked them that for a couple of
months, just to see what they would say. And if I feel like I’m
comfortable to tell them—you know everybody’s different. I
feel like if they can’t take it I’ll break up with them. Then I’ll
tell them, ‘It’s for your best’.’’ By testing the hypothetical re-
sponse of their partner when determining whether or not to
disclose to them, these women were protecting themselves
against possible negative and stigmatizing reactions.

Disclosure and stigma. Lack of disclosure was, in fact,
associated with a fear of incurring stigmatizing beliefs about
HIV from others, particularly gossip and potential rejection
by partners. One participant described how HIV-related
stigma and her assessment of the particular partner she was
with influenced her disclosure decisions: ‘‘My new boyfriend,
he don’t know. My ex-boyfriend didn’t. You can’t tell every-
body because everybody have a different reaction when they
don’t know the real story or the real concept of the disease. So
I don’t tell my partner.’’ She went on to say of her other
partners ‘‘the other two, no. They’re too ‘hood’. They’re too
‘in-the-street’’. So it’s like, ‘‘I’m not telling you. I know my

194 CLUM ET AL.

distance.’’ Another woman linked the subtheme of intimacy/
timing to the subtheme of stigma. She described how the
length of time she has known her partner is important to her
decision to disclose her status. She felt that early disclosure
was potentially problematic and could lead to public exposure
and stigmatization: ‘‘Well, I really look at it as a time issue. If I
see I’ve been dealing with this person for so long, I’ll tell them.
But I always wait a grace period because I don’t want to tell
any and everybody because people are so prejudiced.And
everybody knows everybody, and I don’t want to be walking
around and they’re like ‘Oh, that’s – she right there.’

These young woman thus made situation specific decisions
regarding disclosure based on a character assessment of her
partners, with HIV-related knowledge and stigma playing a
role in that assessment process.

Emotional costs of disclosure. Other women reported
that disclosures resulted in relationship termination and sta-
tus exposure. As one woman expressed: ‘‘I have seen people
that got treated so bad because they told the person they
thought that loved them, and they turned around, and they
just turned their back on them, told everybody in the streets
their business. So that’s why I say make sure that person is the
right person.’’ Much like the women who chose to delay
disclosure based on their partner’s reaction to a disclosure
scenario, these young women approached each relationship
with a strategy for disclosure that was based on an assessment
of potential stigmatizing reactions and whether or not they
perceived their partner and relationship as ‘‘right’’ for them.

It was evident in several narratives that the emotional cost
of engaging in HIV status disclosure was high. One woman
described a phenomenon related to disclosure that she
thought was relevant to other women that she knew. She said
that the cost of engaging in the disclosure process was so great
that once you have disclosed to a partner, it is difficult to want
to move on to another partner and have to go through the
disclosure process again. She explained that this lead to re-
maining in relationships that were detrimental: ‘‘I think like,
for my friends, a lot of my friends, that most of them rather,
that they stay in relationships that they don’t want to be in
mostly with their partner that knows because the fact that
they’re afraid to start over again.’’

She also directly linked stigma associated with HIV to re-
maining in bad relationships: ‘‘And most of the times it’s bad
relationships because the partner uses it as, you know, no-
body else is going to want you because you got that or things
like that. And that’s really hard to know that you have to start
all fresh and have to go through the whole process of telling
your partner and all that. That’s hard. So I have friends stuck
in situations you don’t want to be in because you don’t want
to start over.’’

This perception reflects several important themes, including
the stigma of living with HIV and the links between stigma,
disclosure, and increased vulnerability to ‘‘bad relationships’’
that might include emotional or other forms of abuse.

Moral obligation. Some women eventually disclosed their
status to a sexual partner. One primary motivation appeared
to be feelings of guilt over not disclosing sooner and a sense of
moral obligation to disclose. As one woman described: ‘‘In the
beginning [of the relationship] I just used protection. And
then it just was eating me up inside. I just had to tell him.’’

Another woman stated: ‘‘I think it should be a moral obliga-
tion to tell even if you might make a mistake. Some women
feel as though after it’s done, it’s done, and then just go on
repeating the same mistake. They have sex with a guy and
then leave him alone because they’re so afraid that he’s going
to find out, or they just never ever really able to tell him, or if
you—just because a mistake is made doesn’t mean you can’t
clean it up.’’

However, she herself was still unable to tell some of her
partners in spite of her belief that she had an obligation to do
so. She adds: ‘‘I have gone back and told people, and I have
people that I need to tell, but I don’t just dismiss it, you know.’’
She struggled with what she felt was a moral obligation to
disclose and the reality of actually disclosing, but was clear
that her decision making was not taken lightly.

Partner reactions to disclosure

Women who disclosed their status, reported partner reac-
tions to HIV disclosure that were varied, including positive,
negative and neutral responses. Some women reported men
who were shocked and upset, but eventually accepted the
diagnosis and maintained the relationship. One woman who
waited to tell her sexual partner about her status felt fortunate
in his decision to stay involved with her: ‘‘About 6 months to a
year, then I told him. I wouldn’t say he was okay. I can’t say it
didn’t bother him, but he didn’t turn his back; he didn’t leave.
He stayed. I was lucky.’’

Other women said that their partner ‘‘didn’t care’’ about the
diagnosis. Several women mentioned that when they did
disclose their status to partners, partner reactions included a
willingness to risk acquisition of HIV. As one woman who
made selective assessments regarding which partners to dis-
close to stated: ‘‘I only told one partner after my baby’s father,
and he understood it. He didn’t care. He didn’t care. He’s like,
‘I’m with you. I don’t care’ or whatever. ‘If we get it, we get it
together.’’’ It appeared that her partner’s attitude toward ac-
quiring HIV represented a gesture of intimacy. She continued:
‘‘Even before he went and got tested he said, ‘I don’t care. I
love you. Oh well, we’re going to get it together.’’’ Another
woman reported that she and her partner had not used con-
doms during their sexual relationship even after her disclo-
sure, and she saw his HIV diagnosis as an eventual certainty:
‘‘And we haven’t [used a condom], and he gets tested, and so,
far so good. I’ll face that road when we get to it because, of
course, eventually, he’ll most likely—he’ll eventually get it or
something.’’

Partner reactions to disclosure also demonstrated a lack of
education about HIV. As one participant described her part-
ner’s response to her disclosure: ‘‘It went off pretty well [the
disclosure] because he don’t believe that I have it.He got
tested (after unprotected sex). And he’s like, ‘I really don’t
believe you because I’m good now and it don’t say positive.’
So he don’t believe me.’’ In this case, her partner’s lack of
knowledge regarding HIV transmission influenced his reac-
tion to her disclosure, and potentially her ability to commu-
nicate effectively about risk for transmission and motivate her
partner to engage in safe sex strategies.

Disclosure and condom use

The relationship between disclosure and condom use was
also complicated and varied according to disclosure timing,

HIV DISCLOSURE AND ABUSE 195

partner reactions to disclosure, and prior condom use be-
havior. As is evident from some of the above quotes, some
young women did disclose their status to their partners, but
this disclosure did not result in safer sex practices. Several
women who had not disclosed their status to partners re-
ported that they engaged in unprotected sex with partners,
and that the delay in their disclosure made it more difficult to
initiate safer sex as time passed. As one participant stated:
‘‘We never used protection from day one, which, when I first
was with him, I knew; I had found out. I didn’t know how to
tell him when we were sexually active without protection,
before I even told him. And then once I told him, he was so
afraid, so he was upset about it because I didn’t tell him.’’
Another participant who had not disclosed her status to her
partner described her distress at not saying anything about
discontinued condom use: ‘‘Yeah, we used a condom, but he
took it off. He took it off, but I still felt bad because I should
have said something.’’ Thus for some women, delay of dis-
closure appears to be related to difficulty in initiating or
maintaining condom use.

However, not all of the women in the study had difficultly
negotiating condoms. Here, those women who reported that
‘‘they don’t negotiate,’’ meaning that condom use was a given
and non-negotiable, were consistent with reporting regular
condom use in their sexual relationships. Insisting on condom
use did not necessarily mean that a woman had disclosed her
status; rather, it meant that she had a policy on condom use
that she had identified for herself and made clear to her
partners. One woman articulated her beliefs regarding con-
dom use and partner reactions to requests for condom use:
‘‘And be like if they’re not using a condom I’m leaving. That’s
it. And if they’re just going to let you leave like that, then that
means they never cared about you.’’

Other women reported more difficulty with condom ne-
gotiation, including justifications for their use in lieu of status
disclosure and dealing with negative partner reactions. For
example, one woman stated: ‘‘Yeah, and I’m like, ‘‘But you
have to.’’ He’s like, ‘‘Why’’? And then, I don’t want to just tell
him right there and then, but then at the same time—because
once I said, ‘‘Oh, well, you might have something, and you
don’t know it,’’ or something like that, and then he’ll get real
defensive. So I don’t want to bring it up like that, so I try not to
just be around it.’’

Other women made distinctions between condom use with
their main partner versus a casual partner, as one woman
said: ‘‘I mean, if it’s just a fly by night— yes, I’m going to use a
condom but if it’s just my main boyfriend— you know,
nn-nnn.’’ Thus, for some women, the decision to use condoms
or negotiate condom use is affected by the need to demonstrate
intimacy, to imply exclusivity and in some cases to avoid
disclosure of HIV status. It was also clear that those women
who were more comfortable and assertive with condom ne-
gotiation, had partners who accepted condom use, and who
were willing to ‘‘move on’’ if partners did not want to use
condoms were more likely to engage in safe sex practices.

Discussion

This study provides insight into the complexities sur-
rounding HIV disclosure and safe sex negotiation among HIV
positive women with abuse histories. Women with abuse
histories may experience sequelae stemming from abuse that

have the potential to affect how they approach disclosure with
partners. Increased sense of powerlessness, self blame, shame,
and decreased assertiveness associated with prior abuse ex-
periences may impact women’s decisions to disclose and the
strategies they engage in regarding disclosure and sexual
behaviors. While all women in this study had abuse histories,
and thus we could not compare their narratives around dis-
closure with those who have not experienced abuse, several
themes emerged that were consistent with abuse sequelae.

Women in this study employed a variety of strategies
around disclosure of their HIV status. Some women avoided
status disclosure altogether, either because they viewed their
HIV status as a private matter that could be problematic in a
relationship or had a difficult time accepting their own status.
Many delayed status disclosure and struggled with defining
the right situation or the right person to tell their status to, and
employed strategies such as gauging partner reactions to
potential disclosure scenarios or considering the future of
their relationship with a sexual partner to determine whether
or not to disclose their status. Delay strategies were thus tied
to relationship factors that together influenced women’s
disclosure.

Relationship factors, including fear of partner rejection, fear
of stigmatizing reactions from partners, and a sense of moral
obligation to notify partners of their HIV positive status
were major factors driving the decision to disclose across
narratives. These findings are consistent with other qualitative
studies where HIV positive youth describe fear of rejection
and stigmatizing responses as major drivers in their decision
whether or not to disclose their status.51,52 These narratives
thus suggest an exchange pattern within relationships that
may further elucidate motives for lack of disclosure within
certain types of relationships, with certain types of partners,
and at particular points within the relationship. These ex-
change patterns align with theories of exchange within sexual
relationships including equity theory53,54 and investment
theory.54–57 Similar to findings from previous research dem-
onstrating increased disclosure of serostatus to primary and
longer term partners, women in this study were more likely to
disclose their HIV status to longer term partners, choosing to
exchange this information with trusted partners with whom
they were willing to share a level of intimacy. Intimacy is a
valuable resource exchanged in relationships. Disclosing a
stigmatized condition is a social risk,27 and sharing this risk
creates inequity in the relationship and may also prohibit
termination of the relationship because of the investment of
intimacy through the sharing of personal information that
reveals a vulnerable aspect of their perception of self this re-
source.54,58 Young women in this study described hesitation in
leaving a partner, even in scenarios where the relationship did
not meet their expectations, given their investment of shared
intimacy through status disclosure, and a desire to avoid
having to repeat this process again with someone new.

Following exchange theory, it is also possible that partici-
pant’s perceptions of self and self worth as an HIV-positive
woman, and as a woman who has experienced abuse, low-
ered her belief in the ability to find a better partner who would
accept her status. Applying an exchange framework, as
voiced by the participants in this study, assists in under-
standing the role of perceived external and internal stigma as
a determinant of disclosure. In addition to increasing efficacy
and skills related to sexual communication, addressing

196 CLUM ET AL.

underlying perceptions of self-esteem and internalized stigma
related to HIV is also important in intervention development.

Women voiced concerns about reactions to disclosure that
include stigmatizing responses and relationship termination.
Relationship loss and stigmatization as a result of disclosure
are real possibilities. Strategies for managing disclosure to
minimize stigmatizing reactions, such as partner education
regarding living with a partner with HIV, are warranted.
Strategies for assisting women with cognitions related to fears
of stigmatizing responses and how they might prepare for a
variety of possible partner reactions (including positive and
negative responses) or loss of partner may also reduce distress
associated with actual or imagined disclosure. A recent study
found individual variation in disclosure strategies as a
method of coping with the stress of HIV diagnosis,59 thus
tailoring to individual preferences should be considered.

The results of this study also suggest that disclosure and
condom negotiation strategies may need to be tailored to the
stage of the relationship, as women who delayed disclosure
reported concerns about how to disclose after time had passed
in a relationship and/or they had engaged in unprotected sex.
Women who choose not to disclose or wait to disclose should
be equipped with skills to manage their own feelings or dis-
tress related to not disclosing, and also strategies for ensuring
maximal safety of self and others in their sexual relationships.
This may mean introducing or strengthening strategies for
negotiation and communication, with a particular emphasis
on dealing with partners who are persistent in their desire to
not use condoms.

In our study, those women who were clear that they would
not have sex without a condom were the most likely to
practice safe sex. This is consistent with literature doc-
umenting a strong relationship between sexual communica-
tion and engagement in protected sex.60 Further, less assertive
women and those who did not believe they could control
condom use in partners were less likely to use condoms.61 For
those women who consistently used condoms in this study,
motivations for the safety of self and others appeared to be
important. However, there was also evidence of positive es-
teem for self that was evidenced in those who said they ‘‘don’t
negotiate’’ and always use condoms. These women did not
appear to link intimacy to their use of condoms unless it was
to suggest that a partner who won’t use condoms is not a good
choice for a partner. Further, they had the skills to be assertive
and the willingness to ‘‘move on’’ from a partner if needed,
perhaps suggesting greater emotional and/or economic in-
dependence.62 Leveraging these phenomenon, such as moti-
vations for safety of self and others and positive self regard
could be useful in promoting safe sex practices and facilitating
disclosure.

Another important finding in this study was the reported
willingness of male partners to risk HIV acquisition after
learning a woman’s HIV status. This risk taking appeared to
be tied to intimacy for some, to feelings of invulnerability, and
perhaps to a lack of education about risks for transmission
and what HIV ‘‘looks like’’ in others. HIV-related stigma or
lack of education may lead to beliefs that people with HIV
look sick, malnourished, and could not appear to be a healthy,
functioning young adult woman. A recent qualitative study of
HIV-positive women and their serodiscordant partners un-
derscored the findings that intimacy, invulnerability and lack
of education may contribute to serodiscordant partners’ un-

willingness to use condoms, and also suggested that sexual
pleasure and control were important factors.63 The authors
also described a ‘‘wearing down’’ process where women’s
attempts to get partners to use condoms are met with partner
resistance and subsequent arguments, resulting in unpro-
tected sex as the outcome.

Strategies for managing partners who are persistent in their
negotiations not to use condoms should be considered for this
population. Notably, some women experienced ongoing dis-
tress with regard to their partner’s unwillingness to use con-
doms, for fear of their eventual HIV infection, which has also
been noted in the literature.63 Future research should explore
sexual risk taking in couples where HIV is an issue from a
relational perspective. For those women who are HIV posi-
tive, venues to educate discordant partners and provide ac-
ceptable strategies for sexual safety, as well as interventions
that focus on the quality of the couple’s relationship generally
and sexual relationship specifically may be beneficial.64

Other emotional constructs may also be relevant to women
with abuse histories negotiating disclosure and condom use
that were not explored here. A recent study exploring abuse,
attachment in relationships, and sexual risk concluded that
attachment anxiety had direct effects on sexual risk behav-
iors,65 thus relational factors such as attachment could be an
important link between the effects of abuse and sexual risk.
Additionally, for those young women with abuse histories,
understanding cognitions related to intimacy, safety, and es-
teem of self and others may be an important focus for
changing behavior and increasing sexual safety.

This study has several limitations. First, all women had
abuse histories, so comparing the experiences of those HIV-
positive women with abuse histories and without abuse his-
tories on disclosure and links to condom use would help
clarify those factors that are unique to the experience of abuse.
It is possible that women with childhood abuse histories are
not different than their non-abused counterparts in the way
that they approach disclosure with partners. Future studies
should use quantitative and qualitative methods to pursue
this question further. Nonetheless, given the high prevalence
of abuse in HIV-positive women and the theoretical and
empirical support for vulnerability to low assertiveness and
poorer sexual communication in women with child abuse
histories, it is important to understand their lived experiences
and begin to target interventions to their needs. An additional
limitation is the focus on a clinical population. All women
were engaged in HIV related clinical services, and this may
reflect a higher functioning group that is not representative of
the larger population of HIV-positive women with abuse
histories. Most of the women were African-American and
represent a narrow age range. Disclosure strategies may vary
as a function of ethnicity and developmental stage. Time since
trauma, and the presence of cumulative trauma may also be
relevant variables that impact adjustment and disclosure.
Further research should include exploration of these issues in
a range of women using both quantitative and qualitative
methods. Finally, the impact of abuse on sexual communica-
tion and behavior is relevant to men with HIV as well. Further
studies should include men and women and examine gender
as a potential modifier in these relationships. Women with
abuse histories continue to engage in unprotected sex, and
may be particularly vulnerable due to sequelae of their abuse
experiences. In addition to addressing their mental health

HIV DISCLOSURE AND ABUSE 197

symptoms, there is great need to address communication and
disclosure strategies, and assist women with relational factors
influencing sexual behavior.

Acknowledgments

We acknowledge the ATN sites that participated in this
study: Montefiore Medical Center, Bronx, NY; University of
Miami School of Medicine, Division of Adolescent Medicine,
Miami, FL; and Children’s Hospital of Philadelphia, Phila-
delphia, PA. We thank ATN’s Behavioral Leadership Group,
ATN Coordinating Center at University of Alabama at Bir-
mingham, and Westat, Inc. We are grateful to the members of
the ATN Community Advisory Board and to the youth who
participated in this study. This study was funded by grant No.
5-K01MH070278 to the first author from the National In-
stitutes of Health through the National Institute of Mental
health. Additional funding and support was provided by The
Adolescent Trials Network for HIV/AIDS Interventions
(ATN) which is funded by Grant No. U01 HD40533 from the
National Institutes of Health through the National Institute
of Child Health and Human Development (A. Rogers, R.
Nugent, L. Serchuck), with supplemental funding from the
National Institutes on Drug Abuse (N. Borek), Mental Health
(A. Forsyth, P. Brouwers), and Alcohol Abuse and Alcoholism
(K. Bryant).

Author Disclosure Statement

The authors declare no conflicts of interest with respect to
the authorship and/or publication of this article.

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Address correspondence to:
Gretchen Clum, PhD

Department of Community Health Services
Tulane University School of Public Health and Tropical Medicine

1440 Canal Street, TW-19
New Orleans, LA 70112

E-mail: [email protected]

200 CLUM ET AL.

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