Discussion 22
Consultation Implications in ContextPrior to beginning work on this discussion, be sure to read the required articles for this week.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 Week Five discussion case file or detailed information on the current case under review.In your initial post, explain how the APA Ethical Principles and Code of Conduct can be used to guide decisions in this ethically complex situation. Provide a suggested course of action for the clinic staff. Given the daughters age and the situation presented, integrate concepts developed from different psychological content domains to support your suggested course of action. Be certain to use evidence-based psychological concepts and theories to support your arguments. You may wish to consider the following questions as you construct your post.
Should the staff encourage the daughter to inform her mother that she is sexually active?
Would knowledge regarding her daughters sexual activity influence the mothers stance regarding disclosure?
Should the staff break confidentiality and inform the mother that her daughter is sexually active?
Should the staff encourage the mother to inform the daughter of both her and her daughters HIV status?
Does the daughters boyfriend have any rights in this situation? If so, what are they?
Based on the daughters age, does the mother have a right to not disclose the diagnosis to her daughter?
Does the mother have a right to the privacy regarding her own diagnosis, which could be threatened if her daughter learns of her own status?
Are there other approaches the staff can take? If so, what are they?
Is further information required in order for you to create an ethically sound suggested course of action?
https://www.apa.org/ethics/code/index
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Week Five Discussion Case File
Case Summary
Client: Victoria, 16-year-old HIV positive Latina
Consultation and suggested course of action regarding disclosure of Victorias HIV positive
status was received 4 years ago. Clinic decision was to honor mothers 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 mothers insistence on non-
disclosure. The physician has not broken Victorias 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
Victorias 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 Victorias 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: Tinas 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. Theyve 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 clinics 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 clinics therapist thinks Tinas 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;
101:10111023. 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 persons 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 persons 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 childrens 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 1Characteristics of Studies on Disclosure of HIV Status, January 1997October 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 2Studies (n = 96) on Levels and Patterns of HIV Status Disclosure, January 1997October 2008
Population (Location) No. of Studies Disclosure to Anybody, % Disclosure to Sexual Partners, % Disclosure to Family, % Disclosure to Friends, %
United States (n = 46)
Adults1423 10 82 5681 (casual partners 25;
main partners 74)
7087 (7779 to mothers;
4765 to fathers)
2688
Parent to children
2434,a,b
11 3075 to parents;
3262 to children
Men
3536
2 5360
Women3745 9 96100 6892 6084 (6681 to mothers;
2551 to fathers)
2883
MSM12,17,4655,c 12 8097 5480 (38-42
casual partners)
50 (3767 to mothers;
2347 to fathers)
85
Injection drug users
56,57
2 6186
Europe (n = 10)
Adults (France,
5860
Russian Federation,
61
Sweden,
62
United Kingdom
6365
)
8 8597 8897 5377 5779
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,
7174
Uganda,
75
Tanzania,
76,77
Zambia
78
)
12 2296 2891 (65 by men;
73 by women)
6075 643
Parent to children (South Africa,
79
Uganda
80
) 2 4450
e
Women (Burkina Faso,
81,82
Cote dIvoire,
83
Kenya,84,85 Malawi,86 South Africa,8789
Tanzania9092)
12 2294
(46 HIV + ; 97 HIV)
1790 (64 HIV + ;
80 HIV)
2022 15
Asia (n = 8)
Adults (China,93 India9496,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 3784 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 6897 2286 (70-92 LIC; 4467 HIC) 6186
Men
4
1 6788
Women
3
1 1786
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 persons 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 ones
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 lowabout 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 b
