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1 3
AIDS and Behavior
https://doi.org/10.1007/s10461-019-02478-9
SUBSTANTIVE REVIEW
Self‑Disclosure ofHIV Status Among Youth Living withHIV: AGlobal
Systematic Review
KemeshaGabbidon1 · TianyChenneville1· TianyPeless1· SydneeSheared‑Evans1
© Springer Science+Business Media, LLC, part of Springer Nature 2019
Abstract
Self-disclosure of HIV serostatus by youth has been considered an essential component of HIV prevention and medication
adherence efforts. Therefore, a comprehensive investigation of disclosure goals, processes, and outcomes is warranted. We
conducted a global systematic review in accordance with the 2015 Preferred Items for Reporting Systematic Reviews and
Meta-Analysis tool to assess HIV self-disclosure among youth ages 13–24. We identified 5881 articles during our initial
search. After screening titles and abstracts and examining articles in greater detail, 33 studies (35 articles) were included
in the synthesis. The disclosure process model was used to highlight antecedent goals to self-disclosure including common
avoidance goals such as fear of rejection and isolation. While disclosure was associated with negative and positive emotional
outcomes and improved medication adherence, there remain concerns regarding the impact of self-disclosure on sexual
behaviors. Implications for practice and future directions for research are presented.
PROSPERO registration number: CRD42018097250.
Keywords Self-disclosure· Serostatus· HIV· Youth· PRISMA-P
Introduction
According to the Joint United Nations Programme on HIV/
AIDS [1], approximately 36.9 million people are currently
living with HIV. The most heavily affected region is the con-
tinent of Africa, where approximately two-thirds of all diag-
nosed individuals worldwide reside. Globally, youth, gay,
bisexual, or other men who have sex with men (GBMSM),
people who inject drugs, sex workers, and transgender
women are most at risk for contracting HIV [1]. Youth ages
13–24 make up a significant percentage of the total global
population living with HIV. In fact, 3.9 million people
between the ages of 15 and 24 are estimated to be living
with HIV [1].
HIV self-disclosure is defined as the autonomous decision
of a person to openly discuss their HIV status with a person
or persons of their choosing [2]. In the existing literature,
the benefits and disadvantages of disclosing one’s serostatus
are often discussed. A literature review conducted by Thoth,
Tucker, Leahy, and Stewart [3] revealed that the status of
a romantic/sexual relationship, gender, sexual orientation,
age, stigma, and lack of social support were common fac-
tors influencing self-disclosure. Beyond the potential to pre-
vent transmission, self-disclosure has been associated with
a number of positive outcomes such as enhanced wellbeing,
decreased feelings of isolation, and increased social support
including increased support from parents for young persons,
which could positively affect adherence to antiretroviral
treatments [3].
Thoth etal.’ [3] literature review provided relevant infor-
mation on factors influencing self-disclosure and the self-
disclosure patterns of youth, as well as recommendations
for facilitating self-disclosure. However, there were some
limitations to the review. While informative, the review
was not systematically conducted or evaluated, nor was the
quality of studies assessed. Such assessments can provide
insight into the methodological quality of research in the
HIV disclosure field. To our knowledge, there currently are
no published systematic literature reviews that include qual-
ity assessments on youth HIV self-disclosure studies.
* Kemesha Gabbidon
kgabbido@mail.usf.edu
1 Department ofPsychology, University ofSouth Florida St.
Petersburg, 140 7th Avenue South, St.Petersburg, FL33701,
USA
AIDS and Behavior
1 3
Theoretical Framework
The disclosure process model (DPM) [4] aims to answer
the question of why and when youth choose to disclose.
This model addresses both self-disclosure decision-making
and outcome processes. DPM posits that self-disclosure of
HIV and that of other stigmatizing conditions need to be
assessed as one event, incorporating the decision making
and outcomes processes. DPM is the first model of its kind
to include 5 essential components in evaluating the deci-
sion making and outcome processes associated with self-dis-
closure. These include antecedent goals, disclosure events,
mediating processes, outcomes, and a feedback loop.
Purpose ofStudy
To address important gaps in the literature, the purpose of
this study was to use DPM to critically appraise and synthe-
size studies investigating the antecedent goals, disclosure
patterns, and long-term outcomes of youth self-disclosure.
As well, the study provides recommendations to enhance
self-disclosure among youth living with HIV (YLWH) by
conducting a systematic review using the 2015 Preferred
Items for Reporting Systematic Reviews and Meta-Analysis
(PRISMA-P) tool [5]. Systematic reviews provide high-level
evaluation of the literature to ensure inclusion of all relevant
articles, including qualitative studies, and additional studies
published during recent years.
Methods
The current systematic review was conducted in accordance
with the PRISMA-P tool [5]. PRISMA-P is an expansion
of the PRISMA (Preferred Reporting Items for System-
atic Review and Meta-analysis) guidelines and aligns with
components of the (a) PROSPERO registry; (b) Standard
Protocol Items: Recommendations for Interventional Trials
checklist items; and (c) Standard 2.6 of the Institute of Medi-
cine’s Standards for Systematic Reviews [6]. PRISMA-P has
been used previously in the preparation of systematic review
protocols and by editors and researchers to assess the quality
of systematic reviews [6]. The PRISMA-P checklist incorpo-
rates several aspects including, but not limited to, providing
a rationale for the review, assessing the inclusion criteria,
presentation of a search strategy, and synthesis methodology.
Inclusion andExclusion Criteria
This review included empirical HIV self-disclosure stud-
ies that: (a) were published between January 1, 2002 and
December 15, 2017 in peer-reviewed journals, (b) included
a sample of youth ages 13–24 living with HIV, (c) included
youth HIV self-disclosure as a primary or secondary vari-
able of interest, and (d) were published in English. Studies
with a broader age range were included if the authors pro-
vided stratified data or data specific to youth within the age
range. If not, the study was excluded. The unique nature of
this review is that we did not limit inclusion by study design
or methodology, and, therefore, the review included a wide
range of quantitative and qualitative methodologies. There
were also no restrictions placed on the country where the
study was conducted as long as the manuscript was avail-
able in English.
Literature Search Strategy
The search strategy included specific search terms identified
and agreed upon by the authors after consulting with a librar-
ian with expertise in health database searches. Databases
were restricted to those available through the University of
South Florida’s Library System. The initial search was con-
ducted independently by 3 reviewers in the following 5 data-
bases: PubMed-Medline, PsycINFO, Web of Science, Edu-
cation Resource Information Center (ERIC), and the Social
Science Database (See Table1). The initial literature search
was conducted from November 1, 2017 to December 15,
2017 and yielded 5881 articles. After screening for dupli-
cates, authors reviewed the inclusion criteria and 3 review-
ers independently screened titles and abstracts. Reviewer 1
screened the first half of all titles and abstracts, and reviewer
2 screened the second half. Reviewer 3 screened all titles and
abstracts allowing for all titles and abstracts to be reviewed
independently by 2 reviewers. If 2 reviewers agreed on the
article’s appropriateness for review, the article was moved
to full-text review. If both reviewers agreed the article did
not meet eligibility criteria, it was removed. In instances
where the 2 reviewers disagreed about the eligibility of an
article, a third reviewer assessed the title and abstract inde-
pendently and made the final decision. Every article that met
the inclusion criteria was identified, and the full text of each
article (n = 37) was reviewed for additional relevant studies.
Eighteen additional and relevant studies were identified for
review using this method (See Fig.1). After full-text article
review, a total of 33 studies (35 articles) were included in
this synthesis.
Data Extraction andAssessment ofMethodological
Quality
Data Extraction
Two authors collaborated to create a data extraction
and quality assessment tool using Google Sheets. One
AIDS and Behavior
1 3
Table 1 Search terms
Database HIV Disclosure Adolescents
PubMed-Medline HIV[Mesh:No Exp] OR Human immunodeficiency
virus OR HIV infections[Mesh:No Exp] OR AIDS
OR Acquired Immunodeficiency Syndrome (AIDS)
[Mesh:No Exp]
AND Truth Disclosure [Mesh: No Exp] OR Self
Disclosure [Mesh: No Exp]OR Disclosure [Mesh:
No Exp] OR HIV Disclosure OR HIV serostatus
disclosure OR partner disclosure
AND Adolescen* OR Juvenil* OR Teen* OR
Child*[Mesh: No Exp] OR young* young adult* OR
children & youth OR Peer* OR same-age peer* OR
emerging adulthood OR pediatric*
PsycINFO (HIV OR “human immunodeficiency virus” OR
“human immune deficiency virus” OR “Acquired
Immunodeficiency Syndrome” OR AIDS OR
“HTLV-III” OR “Human T Cell Lymphotropic
Virus Type III” OR “Human T Lymphotropic Virus
Type III” OR “Human T Cell Leukemia Virus Type
III” OR “Human T Cell Leukemia Virus Type III”
OR “Human T-Cell Lymphotropic Virus Type III”
OR “Human T-Lymphotropic Virus Type III” OR
“Immunodeficiency Virus, Human” OR “Immu-
nodeficiency Viruses, Human” OR “LAV-HTLV-
III” OR “Lymphadenopathy-Associated Virus”
OR “Lymphadenopathy Associated Virus” OR
“LymphadenopathyAssociated Viruses” OR “Virus,
Lymphadenopathy-Associated” OR “Viruses,
Lymphadenopathy-Associated” OR “Virus,
Human Immunodeficiency” OR “Viruses, Human
Immunodeficiency” OR “Immunologic Deficiency
Syndrome, Acquired” OR “acquired immune
deficiency syndrome” OR “Acquired Immuno-
Deficiency Syndrome” OR “Acquired Immuno
Deficiency Syndrome” OR “Acquired Immuno-
Deficiency Syndromes” OR “ImmunoDeficiency
Syndrome, Acquired” OR “Immuno-Deficiency
Syndromes, Acquired” OR “Syndrome, Acquired
Immuno-Deficiency” OR “Syndromes, Acquired
Immuno-Deficiency” OR “Immunodeficiency
Syndrome, Acquired” OR “Immunodeficiency
Syndromes, Acquired” OR “Syndrome, Acquired
Immunodeficiency” OR “Syndromes, Acquired
Immunodeficiency”)
AND (Truth Disclosure OR Self Disclosure OR
Disclosure OR HIV Disclosure OR HIV serostatus
disclosure OR partner disclosure)
AND (Adolescen* OR Juvenile* OR Teen* OR Child*
OR young* young adult* OR children & youth OR
Peer* OR same-age peer* OR emerging adulthood
OR pediatric*)
AIDS and Behavior
1 3
Table 1 (continued)
Database HIV Disclosure Adolescents
Web of Science (TS = (HIV OR “human immunodeficiency virus”
OR “human immune deficiency virus” OR
“Acquired Immunodeficiency Syndrome” OR AIDS
OR “HTLV-III” OR “Human T Cell Lymphotropic
Virus Type III” OR “Human T Lymphotropic Virus
Type III” OR “Human T-Cell Leukemia Virus Type
III” OR “Human T Cell Leukemia Virus Type III”
OR “Human T-Cell Lymphotropic Virus Type III”
OR “Human T-Lymphotropic Virus Type III” OR
“Immunodeficiency Virus, Human” OR “Immu-
nodeficiency Viruses, Human” OR “LAV-HTLV-
III” OR “Lymphadenopathy-Associated Virus”
OR “Lymphadenopathy Associated Virus” OR
“LymphadenopathyAssociated Viruses” OR “Virus,
Lymphadenopathy-Associated” OR “Viruses,
Lymphadenopathy-Associated” OR “Virus, Human
Immunodeficiency” OR “Viruses, Human Immu-
nodeficiency” OR “Immunologic Deficiency Syn-
drome, Acquired” OR “acquired immune deficiency
syndrome” OR “Acquired Immuno-Deficiency
Syndrome” OR “Acquired Immuno Deficiency
Syndrome” OR “Acquired Immuno-Deficiency
Syndromes” OR “ImmunoDeficiency Syndrome,
Acquired” OR “Immuno-Deficiency Syndromes,
Acquired” OR Syndrome, Acquired Immuno-
Deficiency” OR “Syndromes, Acquired Immuno-
Deficiency” OR “Immunodeficiency Syndrome,
Acquired” OR “Immunodeficiency Syndromes,
Acquired” OR “Syndrome, Acquired Immunode-
ficiency” OR “Syndromes, Acquired Immunodefi-
ciency”)) AND DOCUMENT TYPES: (Article)
“AND (TS = (Truth Disclosure OR Self Disclosure
OR Disclosure OR HIV Disclosure OR HIV
serostatus disclosure OR partner disclosure)) AND
DOCUMENT TYPES: (Article)
AND (TS = (Adolescen* OR Juvenile* OR Teen*
OR Child* OR young* young adult* OR children
& youth OR Peer* OR same-age peer* OR emerg-
ing adulthood OR pediatric*)) AND DOCUMENT
TYPES: (Article)
AIDS and Behavior
1 3
Table 1 (continued)
Database HIV Disclosure Adolescents
ERIC (EBSCO) HIV OR “human immunodeficiency virus” OR
“human immune deficiency virus” OR “Acquired
Immunodeficiency Syndrome” OR AIDS OR
“HTLV-III” OR “Human T Cell Lymphotropic
Virus Type III” OR “Human T Lymphotropic Virus
Type III” OR “Human T-Cell Leukemia Virus Type
III” OR “Human T Cell Leukemia Virus Type III”
OR “Human T-Cell Lymphotropic Virus Type III”
OR “Human T-Lymphotropic Virus Type III” OR
“Immunodeficiency Virus, Human” OR “Immu-
nodeficiency Viruses, Human” OR “LAV-HTLV-
III” OR “Lymphadenopathy-Associated Virus”
OR “Lymphadenopathy Associated Virus” OR
“LymphadenopathyAssociated Viruses” OR “Virus,
Lymphadenopathy-Associated” OR “Viruses,
Lymphadenopathy-Associated” OR “Virus,
Human Immunodeficiency” OR “Viruses, Human
Immunodeficiency” OR “Immunologic Deficiency
Syndrome, Acquired” OR “acquired immune
deficiency syndrome” OR “Acquired Immuno-
Deficiency Syndrome” OR “Acquired Immuno
Deficiency Syndrome” OR “Acquired Immuno-
Deficiency Syndromes” OR “ImmunoDeficiency
Syndrome, Acquired” OR “Immuno-Deficiency
Syndromes, Acquired” OR “Syndrome, Acquired
Immuno-Deficiency” OR “Syndromes, Acquired
Immuno-Deficiency” OR “Immunodeficiency
Syndrome, Acquired” OR “Immunodeficiency
Syndromes, Acquired” OR “Syndrome, Acquired
Immunodeficiency” OR “Syndromes, Acquired
Immunodeficiency”)
AND (Truth Disclosure OR Self Disclosure OR
Disclosure OR HIV Disclosure OR HIV serostatus
disclosure OR partner disclosure)
AND (Adolescen* OR Juvenile* OR Teen* OR Child*
OR young* young adult* OR children & youth OR
Peer* OR same-age peer* OR emerging adulthood
OR pediatric*)
AIDS and Behavior
1 3
Table 1 (continued)
Database HIV Disclosure Adolescents
Social Science Database (HIV OR “human immunodeficiency virus” OR
“human immune deficiency virus” OR “Acquired
Immunodeficiency Syndrome” OR AIDS OR
“HTLV-III” OR “Human T Cell Lymphotropic
Virus Type III” OR “Human T Lymphotropic Virus
Type III” OR “Human T-Cell Leukemia Virus Type
III” OR “Human T Cell Leukemia Virus Type III”
OR “Human T-Cell Lymphotropic Virus Type III”
OR “Human T-Lymphotropic Virus Type III” OR
“Immunodeficiency Virus, Human” OR “Immu-
nodeficiency Viruses, Human” OR “LAV-HTLV-
III” OR “Lymphadenopathy-Associated Virus”
OR “Lymphadenopathy Associated Virus” OR
“LymphadenopathyAssociated Viruses” OR “Virus,
Lymphadenopathy-Associated” OR “Viruses,
Lymphadenopathy-Associated” OR “Virus,
Human Immunodeficiency” OR “Viruses, Human
Immunodeficiency” OR “Immunologic Deficiency
Syndrome, Acquired” OR “acquired immune
deficiency syndrome” OR “Acquired Immuno-
Deficiency Syndrome” OR “Acquired Immuno
Deficiency Syndrome” OR “Acquired Immuno-
Deficiency Syndromes” OR “ImmunoDeficiency
Syndrome, Acquired” OR “Immuno-Deficiency
Syndromes, Acquired” OR “Syndrome, Acquired
Immuno-Deficiency” OR “Syndromes, Acquired
Immuno-Deficiency” OR “Immunodeficiency
Syndrome, Acquired” OR “Immunodeficiency
Syndromes, Acquired” OR “Syndrome, Acquired
Immunodeficiency” OR “Syndromes, Acquired
Immunodeficiency”)
AND (Truth Disclosure OR Self Disclosure OR
Disclosure OR HIV Disclosure OR HIV serostatus
disclosure OR partner disclosure)
AND (Adolescen* OR Juvenile* OR Teen* OR Child*
OR young* young adult* OR children & youth OR
Peer* OR same-age peer* OR emerging adulthood
OR pediatric*)
AIDS and Behavior
1 3
reviewer extracted data using the data extraction tool
while a second reviewed the extracted data for accuracy.
Reviewers extracted data on the setting, sample charac-
teristics, study design, frequency of disclosure, barriers
and facilitators of self-disclosure, and physiological,
psychological, and behavioral outcomes associated with
disclosure. Next, the quality of each article was assessed
by 2 reviewers independently. Then, reviewers examined
their quality assessment scores to determine the level of
inter-rater reliability. If there were discrepancies between
scores, the reviewers who assessed the article would
review their scoring. If differences were not resolved, a
third reviewer reviewed the article and provided feedback.
Differences in opinion during quality assessment was less
than 5%.
Qualitative Quality Assessment
The quality of each qualitative study was rated indepen-
dently by 2 reviewers using a modified version of the Walsh
and Downe [7] criteria. The studies were assessed on 8
components: study purpose, study design, sampling strat-
egy, analysis, interpretation, reflexivity, ethical dimensions,
and relevance and transferability. Each article was screened
based on each component and was categorized as meeting
the standard or failing to meet the standard. For example,
under the design component, reviewers had to assess the
Records identified through database searching
(n = 5881)
Records after duplicates removed
(n =5855)
Records screened (titles and
abstracts (n = 5855) Records excluded
(n = 5818)
Full-text articles assessed for eligibility
(n = 37)
Full-textarticles excluded-8
Not on self-disclosure-1
Not empirical-3
Incorrect age range- 1
Outside time span-1
Did not include stratified data for
youth-1
Instrument validation-1
Studies included in
qualitative synthesis
(n =16); 17 papers
Studies included in
quantitative synthesis
(n = 17); 18 papers
Identification
Screening
Eligibility
Included
Number of additional references assessed for eligibility
after reviewing full text
(n=18)
Fig. 1 Search strategy. The systematic review was conducted in accordance with the 2015 Preferred Reporting Items for Systematic Reviews and
Meta-analysis (PRISMA-P) tool[5] between November 1, 2017 and December 15, 2017
AIDS and Behavior
1 3
following questions: (a) Is there discussion of the epistemo-
logical/ontological grounding? (b) Is there a rationale for the
specific qualitative methods (grounded theory, ethnography,
phenomenology, narrative inquiry, etc.)? and (c) Were data
collection methods appropriate for the type of data required
and the specific qualitative method chosen? Global scores
of weak (met 4 or fewer of the criteria), moderate (met 5–6
of the criteria), and strong (met 7–8 of the criteria) were
tabulated by each reviewer.
Quantitative Quality Assessment
The quality of each quantitative and mixed-method study
was rated independently by 2 reviewers using the Quality
Assessment Tool for Quantitative Studies and the accompa-
nying dictionary developed by the Effective Public Health
Practice Project [8]. The studies were assessed on 6 compo-
nents: selection bias, study design, confounders, blinding,
data collection, and withdrawal or dropouts. Each compo-
nent was screened and given a score of weak, moderate,
or strong, and then a global rating of weak, moderate, or
strong was assigned for the overall study. Scores for each
component were determined using the study component
scoring criteria developed by the Effective Public Health
Practice Project. For example, under study design, a study
was considered strong if it was a randomized controlled trial
or a controlled clinical trial. A moderate component score
for study design would be assigned to cohort analytic stud-
ies, case–control studies, cohort design studies, and stud-
ies using an interrupted time series. All other study designs
were considered weak. Likewise, under the data collection
methods component, studies that included instruments with
reported reliability and validity received a strong score,
while studies using instruments without reported validity
and reliability received a weak score.
A study received a strong global rating when 4 compo-
nents received a strong rating and no component received a
weak rating. A study received a moderate global rating when
less than 4 components were rated strong, while one com-
ponent was rated weak. A study received a weak global rat-
ing when a weak rating was assigned for 2 or more compo-
nents. Reviewers chose to include studies assessed as weak
because this area of research is limited, particularly around
the physiological outcomes associated with self-disclosure,
and methodologically weak studies may still provide valu-
able information in this developing area of study [9].
Results
Study Characteristics andQuality Ratings
A total of 33 studies (across 35 articles) were reviewed
including 18 studies conducted in cities across the continen-
tal United States (U.S.), 1 of which was also conducted in
Puerto Rico. Remaining studies were conducted in Zambia
(n = 1), Uganda (n = 3), Kenya (n = 1), South Africa (n = 3),
Thailand (n = 2), Switzerland (n = 1), Sweden (n = 1), Brazil
(n = 1), London (n = 2), and Canada (n = 1; See Table2).
Sample sizes varied across studies ranging from N = 7 in the
smallest study to N = 991 in the largest study. Studies with
the smallest sample sizes were qualitative studies. There
were N = 5410 youth participants combined across studies.
The majority (75%; n = 25) of studies had a predominantly
Black sample (African American, African, Afro-Caribbean),
while 9.4% (n = 4) had a predominantly White/European
sample, 6.25% (n = 2) had a predominantly Asian sample,
3.12% (n = 1) had a predominantly Hispanic sample, and
3.12% (n = 1) had a predominantly Mixed-race sample. Fif-
teen studies (45%) included a predominantly female sample.
Among all the studies, 48.5% (n = 16) were methodologi-
cally weak quantitative studies [10–26] and 21.2% (n = 7)
were methodologically weak qualitative studies [27–34].
Additionally, 24.2% (n = 8) were methodologically moder-
ate qualitative studies [35–42] and 6.0% (n = 2) were meth-
odologically moderate quantitative studies [43, 44]. None
were assessed as methodologically strong (See Table3). For
quantitative studies that tested for statistical significance,
only statistically significant findings are reported in the sec-
tions to follow.
Frequency ofDisclosure andCondant
The frequency of disclosure among YLWH and how it
was assessed varied widely across studies. For example,
in 1 study, disclosure frequency was assessed over the last
6months, where only 11% of youth had disclosed their sta-
tus to at least 1 person within that time frame [23]. Another
study looked at “ever” disclosing serostatus, where 100% of
participants had disclosed to at least 1 person [13]. To whom
participants disclosed their status varied depending on a
variety of factors including their relationship with the per-
son, their gender, and age. Females more commonly reported
disclosing than males, a finding reported in Thailand and
North America [13, 17, 25]. In a study conducted in Canada
including both males and females [29], only females had
previously disclosed their status. However, among women,
disclosure varied based on other factors. For example, in a
study conducted in the U.S., women who desired pregnancy
disclosed to about 40% of their friends and about one-third
AIDS and Behavior
1 3
Table 2 Study Characteristics of Studies Included in Synthesis
Lead author, year Methodology Setting Race/ethnicity Sample (N) Gender Transmission Confidante Findings
1. Abramowitz,
2009
ACASI and face-
to-face question-
naires
Maryland, USA;
New York, USA;
Washington,
D.C., USA
72% Black non-
Hispanic, Black-
multiracial and
20% Hispanic
166 53% female, 47%
male
60% perinatal
40% behavioral
Family
members,
friends
Older youth
(F[1,161] = 16.345
p < .001) and behavio-
rally infected youth (F[1,
161] = 14.304, p < .001)
report having signifi-
cantly more friends who
know their HIV status
compared to younger
youth and perinatally
infected youth
2. Bakeera-Kitaka,
2008
Focus Groups Kampala, Uganda 100% Ugandan 75 46.7% female,
53.3% male
85.6% perinatal
14.4% behavioral
Romantic/
sexual
partners
Youth were not often
believed when disclosing
because they “did not
look sick.” Anticipated
barriers included rejec-
tion, discrimination,
anxiety, loss of control
of information, and sub-
sequent disclosure
3. Batterham, 2005 ACASI and face-
to-face question-
naires
California, USA;
New York, USA;
Florida, USA
Cohort 1-27%
Black non-
Hispanic, 36.5%
Hispanic, 17.7%
Other/Biracial.
Cohort 2-31.9%
Black non-
Hispanic, 32.5%
Hispanic, and
19.3% Other/
Biracial
Cohort 1, N = 351;
Cohort 2, N = 253
Cohort 1; 72.2%
male, 27.8%
female. Cohort
2; 69.9% male,
31.1% female
Unknown Romantic/
sexual
partners
Odds of disclosure are
increased for young
MSM and those who
have had a longer
time since diagnosis
(t(df = 231) = 4.29,
p < .001). The odds of
disclosure is lower for
casual partner or those
known to be HIV-nega-
tive (χ2 = 20.80; df = 1;
p < .001)
MSMs are more likely
to disclose status than
heterosexual males
4. Battles, 2002 Structured in-depth
interviews,
questionnaires,
archival data
assessment
Washington, DC,
USA
65% White non-
Hispanic, 12.5%
Black non-
Hispanic, 6.25%
Hispanic, and
6.25% Other
80 56.25% male,
43.75% female
35% perina-
tal, 31.25%
hemophilia, and
23.75% other
transfusion
Unknown Greater disclosure is
related to increased
social support, social
self-competence, and
decreased problem
behavior, whereas
public disclosure was
associated with lower
self-concept
AIDS and Behavior
1 3
Table 2 (continued)
Lead author, year Methodology Setting Race/ethnicity Sample (N) Gender Transmission Confidante Findings
5. Calabrese, 2012 Questionnaire USA 56% Black non-
Hispanic, 32%
White non-
Hispanic, 4%
Hispanic, 4%
Native American
25 52% male 48%
female
Perinatal Friends Youth who disclosed
their serostatus to one
or more friends were
less likely to hide taking
medication, which was
associated with higher
CD4+ absolute counts
and percentages. Results
from bootstrapping
analyses indicated signif-
icant indirect effects of
disclosure on medication
hiding for both CD4+
absolute counts and
percentages (95% CIs
[70.07, 929.92], [3.58,
18.38], respectively) but
not on viral load
6. Christianson,
2008
In-depth interviews Sweden 70% Swedish, 20%
African Immi-
grants, 10% Latin
Immigrant
10 50% male, 50%
female
Unknown Romantic/
sexual
partners
Some youth feared others’
reactions or rejections.
Some avoided sex while
others ‘switched off the
disease’ and occasionally
had unsafe sex without
disclosure
7. Clum, 2013 In-depth interviews Florida, USA; New
York City, USA;
Philadelphia,
USA
87.5% Black non-
Hispanic, 5%
Hispanic, 12.5%
Other
40 Female Unknown Romantic/
sexual
partners
HIV-positive young
women with abuse
histories used several
strategies to deal with
disclosure of their HIV
status, including delay-
ing disclosure, assessing
hypothetical responses of
partners, and determin-
ing appropriate stages in
a relationship to disclose.
Barriers included partner
rejection and stigmatiz-
ing attitudes
Condom use did not
change because of
disclosure
AIDS and Behavior
1 3
Table 2 (continued)
Lead author, year Methodology Setting Race/ethnicity Sample (N) Gender Transmission Confidante Findings
8. Cook, 2015 ACASI question-
naire
USA 63.37% Black-non-
Hispanic, 22.09%
Hispanic; 14.12
White non-
Hispanic, 13.11%
Mixed Race, and
8.98% Other
991 94.45% male,
5.55% transgen-
der
97.3% behavioral Sexual/
romantic
partner,
family,
friend or
another
person
A significantly greater
portion of YMSM
who reported disclos-
ing their HIV status
to sexual/romantic
partners engaged in
unprotected anal sex
([v2 (1, N = 799) = 8.20,
p < .001])
Those who disclosed to
their family members
more often engaged in
unprotected anal sex
9. Dempsey, 2012 Questionnaire USA 76.71% Black non-
Hispanic, 23.28%
Other
146 52% male; 48%
female
87% behavioral Romantic/
sexual
partners
Full disclosure was more
frequent among par-
ticipants with a partner
of known HIV positive
status versus unknown
status, p = .001 and
known negative status
versus unknown status,
p = .001
No difference in the rates
of unprotected sex
between those with full
disclosure (43%) and
those who did not dis-
close (50%), p = .39
10. Elliott-DeS-
orbo, 2009
Chart review USA 45.5% Black non-
Hispanic, 43.6%
White non-
Hispanic, 7.3%
Hispanic, 3.6%
Native American
55 55% male, 45%
female
Perinatal Unknown Higher anxiety levels,
lower CD4+ percentages
and absolute counts,
higher viral load levels,
and a greater likelihood
of having been hospital-
ized were seen among
children who disclosed
compared with non-
disclosers
AIDS and Behavior
1 3
Table 2 (continued)
Lead author, year Methodology Setting Race/ethnicity Sample (N) Gender Transmission Confidante Findings
11. Fair, &
Albright, 2012
In-depth interviews Southeast, USA 77.14% Black
non-Hispanic,
8.57% White
non-Hispanic,
5.71% Hispanic,
and 8.57% Mixed
Race
35 65.71% females,
34.28% males
Perinatal Romantic/
sexual
partner
Barriers included fear of
rejection, lack of trust,
and misinformation
about HIV
Participants reported that
disclosure led to them
delaying dating but did
not lead to safer sex
practices; some informed
partners refused to use
condoms
12. Fernet, 2011 In-depth interviews Montreal, Canada 30% Haitian,
27.77% African,
11.11% Cana-
dian, 27.77%
Mixed race
18 Female Perinatal Romantic/
sexual
partner
Participants felt their
partner must be informed
before they get into a
sexual relationship.
However, barriers
included the adoles-
cent having a low viral
load, fear of rejection, a
past sexual partner not
becoming infected, and
a current casual sexual
partner
13. Finger, 2012 ACASI question-
naire
Illinois, USA;
California, USA;
Florida, USA;
Louisiana, USA;
New York, USA
72% Black non-
Hispanic, 21%
Hispanic, 6.9%
other
130 Female Behavioral Friends,
family
members
Women, desiring preg-
nancy disclosed to only
40% of friends and only
one-third of family.
Women with no desire
for pregnancy disclosed
to nearly half of their
relatives and more than
half of their peers
AIDS and Behavior
1 3
Table 2 (continued)
Lead author, year Methodology Setting Race/ethnicity Sample (N) Gender Transmission Confidante Findings
14. Galano, 2017 In-depth interviews Brazil 40% White non-
Hispanic, 5%
Black non-His-
panic, 55% Mixed
Race
20 55% female, 45%
male
Perinatal Romantic/
sexual
partner,
friends
Youth disclosed due to
questions/pressure from
friends or sadness and
guilt about not disclos-
ing, a sense of loyalty,
a need to explain work
absences, questions
about medication, health
concerns, and their
impulsiveness. Barriers
included a fear of aban-
donment and feelings of
rejection
Outcomes associated
with disclosure were
acceptance and unity
with romantic partners
and abandonment and
feelings of rejection from
partners and friends
15. Gillard, &
Roarke, 2013
Semi-structured
interviews
Southern, USA 55.56% Black non-
Hispanic, 44.44%
Hispanic
9 44.44% female,
55.56% male
22.22% behavioral,
55.56% perinatal,
22.22% unknown
Romantic/
sexual
partners,
friends
Outcomes associated with
disclosure included
feelings of relief, feel-
ing closer to others,
and appreciation of the
opportunity to share
lifesaving information
with loved ones
AIDS and Behavior
1 3
Table 2 (continued)
Lead author, year Methodology Setting Race/ethnicity Sample (N) Gender Transmission Confidante Findings
16. Greenhalgh,
2013; 2016
In-depth interview London 85.71% Black
African, 14.29%
White British
7 71.42% female,
28.58% male
Perinatal Romantic/
sexual
partner
2013: Barriers included
the concern that post-
disclosure, some partners
would have negative
thoughts about prognosis
and would also become
anxious about the risk
of contracting the virus
themselves. There
was also concern that
partners would believe
contraction occurred
through infidelity or
promiscuity
2016: To minimize rejec-
tion by partners, youth
considered continuing or
resuming relationships
shaped by disclosure,
disclosing early to avoid
the pain of future rejec-
tion, using condoms to
avoid disclosure and a
partner’s potential reac-
tion by using hypotheti-
cal scenarios
17. Hightow-Wei-
dman, 2013
Interviewer admin-
istered survey
New York, USA;
North Carolina,
USA; Illinois,
USA; Michigan,
USA; Texas,
USA; California,
USA
66.6% Black non-
Hispanic; 21.5%
Hispanic, 11.9%
Multi-racial
362 100% male Behavioral Family
members,
friends,
romantic/
sexual
partners
The majority of partici-
pants had disclosed to a
family member (76.5%),
with higher disclosure
to female relatives
compared with males.
Multiracial and Black
YMSM were more likely
to disclose to steady boy-
friends as compared to
Latino YMSM (p = .003)
AIDS and Behavior
1 3
Table 2 (continued)
Lead author, year Methodology Setting Race/ethnicity Sample (N) Gender Transmission Confidante Findings
18. Hogwood, 2013 Face-to-face, in-
depth interviews
London 88.88% Black
African, 11.12%
Mixed Race
9 77.77% female,
22.22% male
Perinatal Romantic/
sexual
partner,
friends
Some youth reported
disclosing because they
believed disclosure was
inevitable and desirable.
Barriers included myths
and assumptions about
HIV, HIV-related stigma,
trust issues, and fears of
isolation, rejection, and
death
19. Lam, 2007 Interviewer admin-
istered question-
naire
Michigan, USA 87% Black non-
Hispanic, 3%
White non-
Hispanic, 2%
Hispanic, and 8%
Mixed ethnicity
66 51% male, 47%
female, and 2%
male-to-female
transgender
Unknown Family,
friends,
acquaint-
ances
Disclosure to acquaint-
ances was associated
with increased distress
and mental health symp-
toms over a 3-month
period(r(66)0.25,
p < .05). While disclo-
sure to family and close
friends were NOT asso-
ciated with psychologi-
cal distress
Social support was a
potential buffer for
mental health concerns.
There was a relationship
between mental health
and viral load, however,
directionality needs to be
explored further
20. Lee, & Ober-
dorfer, 2009
Questionnaire Northern, Thailand Thai 54 50% female, 50%
male
Perinatal Romantic/
sexual part-
ner, family
members
Females were more likely
to have disclosed their
diagnosis to others com-
pared to males, p = .03
21. Lee, 2015 ACASI question-
naire
USA including
Puerto Rico
56% Black non-
Hispanic, 30%
Hispanic, 8%
Other; 6% White
non-Hispanic
402 50% male, 46%
female, 6%
transgender
Unknown Family mem-
bers
Youth who reported more
than one close friend
(p < .05) and youth who
reported that friends and
family members con-
tinued to socialize with
them after disclosure,
had higher levels of
perceived social support
overall (p < .05)
AIDS and Behavior
1 3
Table 2 (continued)
Lead author, year Methodology Setting Race/ethnicity Sample (N) Gender Transmission Confidante Findings
22. Leonard, 2010 In-depth interviews Texas, USA Youth: 80% Black
non-Hispanic,
15% Hispanic,
5% White non-
Hispanic
35 (20 youth; 15
caregivers)
Youth: 75% female,
25% male
60% perinatal, 40%
behavioral
Romantic/
sexual
partner,
friends
Youth disclosed because
they desired a closer
relationship with their
confidante and the
emotional benefits of
disclosure. Barriers
to disclosure included
stigma, fear of nega-
tive reaction, trust
issues. Youth were also
concerned about loss of
control about informa-
tion and subsequent
unauthorized disclosures
23. Madiba, &
Mokgatle, 2016
In-depth interviews Mpumalanga
& Gauteng
provinces, South
Africa
South African 37 59.45% female,
40.55% male
Perinatal Friend,
teacher
Barriers to disclosure
included stigma, rejec-
tion, feeling as though it
is a secret, and the desire
to feel normal
24. Mburu, 2014 In-depth interviews
focus groups
Zambia Zambian 58 50% female, 50%
male
Unknown Unknown Barriers to disclosure
included stigma, fear of
rejection or abandon-
ment by sexual partners.
Perceived outcomes
associated with disclo-
sure included increased
medication adherence
linked to social support
from peers
25. Michaud, 2009 In-depth interviews Switzerland 68.96% Swiss,
31.04% African
29 75.86% female,
24.14% male
Perinatal Romantic/
sexual
partner,
teachers,
friends
The attitudes toward dis-
closure among younger
adolescents were related
to those of the parents,
particularly the mother.
Older adolescents were
more likely to decide
about disclosure on their
own
26. Nostlinger,
2015
Interviewer admin-
istered question-
naire
Uganda and Kenya Ugandan, Kenyan 582 54.81% female,
45.18% male
Unknown Romantic/
sexual part-
ner, peer
Older adolescents more
likely to disclose
(p = .003)
AIDS and Behavior
1 3
Table 2 (continued)
Lead author, year Methodology Setting Race/ethnicity Sample (N) Gender Transmission Confidante Findings
27. O’brien, 2003 Face-to-face inter-
viewer, question-
naire
Louisiana, USA 84% Black non-
Hispanic
269 52.4% male, 47.6%
female
99.6% behavioral
.4% perinatal
Romantic/
sexual part-
ner, family
members,
friend
Adolescents were less
likely than adults to
disclose to a main
partner, immediate fam-
ily member, or friend.
Nondisclosure rate is
46% versus 29.3%, 95%
CI [2.21, 15.84]. Immu-
nosuppressed youth
were more likely than
non-immunosuppressed
persons to disclose to a
main partner, immedi-
ate family member, or
another relative. Females
were more likely to
disclose to relatives not
in their immediate fam-
ily than males (36.1%
versus 18.7%)
28. Petersen, 2010 In-depth interviews Durban, KwaZulu-
Natal, South
Africa
South African 40 (25 youth) Youth: 48% female,
52% male
Unknown Family
members,
school,
friend
Barriers to disclosure
included a fear of stigma
and discrimination
AIDS and Behavior
1 3
Table 2 (continued)
Lead author, year Methodology Setting Race/ethnicity Sample (N) Gender Transmission Confidante Findings
29. Rongavilit,
2007; 2010
Questionnaire Bangkok, Thailand Thai 70 58.6% female,
37.1% male, 4.3%
male-to-female
transgender
Unknown Romantic/
sexual
partners,
friends,
family
members
2007: Men were more
likely to have a partner
with an unknown HIV
status (40% versus 0%)
and were less likely to
disclose to their partners
than women (73.3%
versus 100%). Youth
who had intercourse
with an HIV-infected
partner were more likely
to disclose to the partner
than those who had
intercourse with an HIV-
uninfected or unknown
status (100% vs. 60%,
p < .01). MSM were
less likely to disclose
to family compared to
heterosexual men. No
association between
disclosure and number
of sexual partners or
condom use was found
2010: YMSM were more
likely to disclose to their
friends (43.9% versus
6.1%, p < .01) and less
likely to disclose to
their immediate family
members (47.6% versus
91.8%, p < .01) when
compared to other
groups of youth living
with HIV. Female youth
were more likely to
disclose to their immedi-
ate family members
(90.2% versus 62.1%,
p < .01) and less likely to
disclose to friends (7.3%
versus 31.0%, p < .05)
than male youth
AIDS and Behavior
1 3
Table 2 (continued)
Lead author, year Methodology Setting Race/ethnicity Sample (N) Gender Transmission Confidante Findings
30. Siu, 2012 In-depth interviews
focus groups
Kampala, Uganda Ugandan 20 50% female, 50%
male
Unknown Family
members,
caregiver
Youth disclosed to caretak-
ers because they believed
disclosure was inevitable
and to gain financial and
social support. Com-
pared to females, males
preferred disclosure to
other people rather than
their partners. Males also
expressed anxiety and
fear of partner disclosure
31. Toska, 2015 Interview, Focus
Group, Observa-
tion, Question-
naire
Eastern Cape,
South Africa
South African 858 52% female, 48%
male
68.1% perinatal,
31.9% behavioral
Romantic/
sexual
partner
Disclosure was not a
priority among casual
partners. Knowing
one’s own status was
associated with safer sex
(OR = 4.355, CI 1.085–
17.474, p = .04). Neither
knowing their partner’s
status, nor disclosing
one’s HIV-status to a
partner, were associated
with safer sex
32. Weiner, & Bat-
tles, 2006
Questionnaire,
Chart Review
Maryland, USA 55% White non-
Hispanic, 25%
Black non-
Hispanic, 12.5%
Hispanic, 7.5%
Other
40 62.5% females,
27.5% male
65% perinatal, 35%
transfusion of
blood/clotting
factor
Romantic/
sexual
partner
Those who disclosed
reported feeling more
self-competent with
peers (F = 3.2, p = .05)
than those with medium/
low disclosure
AIDS and Behavior
1 3
of their family, while women with no desire for pregnancy
disclosed to more than half of their family and friends [24].
In a study conducted in Uganda, males tended to value dis-
closure to other people more than to their romantic/sexual
partners [34]. In another study with young GBMSM ages
15-24, 97% of youth had disclosed their status to at least 1
person [44]. Participants within this study were primarily
Black/African American and/or Hispanic. Results showed
that older adolescents more commonly reported disclosing
[10, 12, 13, 17] compared to younger adolescents. In addi-
tion, adolescents most commonly disclosed to romantic/
sexual partners [11–16, 18, 22, 27–33, 35, 36, 40, 41, 44],
friends [10, 15, 20, 21, 24, 30, 33, 38, 40–44] and/or fam-
ily members [10, 20, 21, 44]. Disclosing to teachers [33,
38] and schools [42] was much less common and often was
prefaced by a need to explain an illness, absence, or medica-
tion use.
Antecedent Goals
According to DPM, disclosure begins with a decision-
making process in which disclosure goals impact the
likelihood of disclosure to others for each case-specific
situation. Antecedent goals include both approach and
avoidance goals [4, 45]. Approach goals are geared
towards receiving a positive or desired outcome (e.g.,
stronger relationships) while avoidance goals are focused
on avoiding an undesired outcome (e.g., rejection) [4, 45].
Avoidance Goals
When youth were evaluating whether or not to disclose,
they often assessed the perceived risks and benefits asso-
ciated with self-disclosure [34]. The most common rea-
sons reported for failure to disclose or delay of self-dis-
closure were anticipated fear and stigma. HIV-related fear
and stigma are often rooted within the social environment
in which YLWH exist [39]. Fear was characterized as fear
of rejection, fear of isolation, and fear of abandonment,
particularly from romantic/sexual partners to whom they
would disclose [18, 28–30, 34, 36–38, 40, 41]. Fear was
reported from studies in Europe, North America, South
America, and Africa but was not reported in studies that
were conducted in Asia. Likewise, avoiding anticipated
HIV-related stigma and discrimination were reported as
avoidance goals within several studies [34, 36, 38, 39, 41,
42]. Anticipated anxiety around subsequent, unauthorized
disclosure [18, 27, 36, 41] and misinformation around
HIV [28, 31, 40] were also reported as avoidance goals to
self-disclosure. In a qualitative study conducted in Lon-
don, youth reported concerns that their romantic/sexual
partners would make inaccurate assumptions about their
Table 2 (continued)
Lead author, year Methodology Setting Race/ethnicity Sample (N) Gender Transmission Confidante Findings
33. Weintraub,
2017
ACASI question-
naire
New York, USA 63% Black non-
Hispanic, 48%
Hispanic
98 50% female, 50%
male
Perinatal Unknown Increased disclosure was
associated with older age
(Older participants were
more likely to disclose
to more sexual partners,
r = 0.24, p = .02), being
female (t(93) = -2.24,
p = .03), increased STI
knowledge (r = 0.21,
p = .041), parent–child
communication (r = 0.23,
p = .022), disclosure
intentions (β = 0.86,
SE = 0.09, p = .001), and
earlier age of learn-
ing one’s serostatus
(β = -0.37, SE = 0.18,
p = .044)
AIDS and Behavior
1 3
HIV diagnosis, assuming it was associated with promis-
cuity and/or infidelity [31]. In addition, findings showed
that youth were unlikely to disclose their HIV status to
a casual sexual partner or within a short-term roman-
tic relationship—a finding seen in a study conducted in
Africa and another in North America [18, 29]. In some
instances, youth felt the need to protect their loved ones
from the perceived negative news or the psychological
harm they believed to be associated with their disclo-
sure. This finding was reported in a study conducted in
Africa and another in the U.S. [34, 44]. Finally, youth
would sometimes choose not to disclose their status if
Table 3 Quality assessment scores
a For quantitative studies: 1 represents a strong component rating, 2 represents a moderate component rating, and 3 represents a weak component
rating
b For qualitative studies: 0 represents a failure to meet the criteria and 1 represents meeting the criteria
Lead author, year Selection
bias
Study design Confounders Blinding Data collection
methods
Withdrawals
and dropouts
Overall score
Quantitative Studiesa
1. Abramowitz, 2009 2 3 3 3 2 N/A Weak
2. Batterham, 2005 2 2 3 3 1 N/A Weak
3. Battles, 2002 1 2 3 3 1 2 Weak
4. Calabrese, 2012 1 3 2 3 3 N/A Weak
5. Cook, 2013 2 3 3 3 1 N/A Weak
6. Dempsey, 2012 1 3 3 3 2 3 Weak
7. Elliott-DeSorbo, 2009 3 3 2 3 2 3 Weak
8. Finger, 2012 2 3 3 3 1 N/A Weak
9. Hightow-Weidman, 2013 2 2 1 2 3 N/A Moderate
10. Lam 2007 2 1 1 3 1 N/A Moderate
11. Lee, 2009 2 3 3 3 3 N/A Weak
12. Lee, 2015 1 3 1 3 1 3 Weak
13. Nöstlinger 2015 2 3 3 3 1 N/A Weak
14. O’Brien, 2003 2 3 3 3 3 N/A Weak
15. Rongkavilit, 2007, 2010 2 3 3 3 1 1 Weak
16. Toska 2015 1 3 1 2 3 1 Weak
17. Weiner, 2006 2 3 3 3 1 2 Weak
18. Weintraub, 2016 2 3 3 3 1 2 Weak
Study Scope and
purpose
Design Sampling
strategy
Analysis Inter-
preta-
tion
Reflexivity Ethical
dimen-
sions
Relevance and
transferability
Overall score
Qualitative studiesb
19. Bakeera-Kitaka, 2008 1 1 0 0 0 0 0 0 Weak
20. Christianson, 2008 1 1 0 1 1 0 1 0 Moderate
21. Clum, 2013 1 0 1 1 1 0 0 1 Moderate
22. Fair, 2012 1 0 0 0 0 0 0 1 Weak
23. Fernet, 2011 1 0 1 0 0 0 1 0 Weak
24. Galano, 2017 1 0 0 0 0 0 0 0 Weak
25. Gillard, 2013 1 0 1 0 1 0 1 1 Moderate
26. Greenhalgh, 2013, 2016 1 0 1 0 0 0 1 1 Weak
27. Hogwood, 2012 1 1 1 0 1 0 0 0 Weak
28. Leonard, 2010 1 1 1 0 1 0 0 1 Moderate
29. Madiba, 2016 1 0 1 1 0 0 1 1 Moderate
30. Mburu, 2014 1 0 1 1 1 0 1 1 Moderate
31. Michaud, 2009 1 0 1 1 0 0 1 0 Weak
32. Peterson, 2010 1 0 1 0 1 0 1 1 Moderate
33. Siu, 2012 1 0 0 0 0 0 1 0 Weak
AIDS and Behavior
1 3
they had a low viral load [29], if a previous sexual partner
had remained uninfected after exposure [29], if they had
concerns over their partner’s perceived HIV transmission
worries [31], if they believed HIV was to be kept a secret
[38], or if they had a desire to feel “normal” [38]. Find-
ings in this subsection were not seen in the small sample
of studies conducted in Asia and South America. Study
findings reported in this section included some studies
scored as methodologically weak [18, 28–31, 34] while
the majority were scored as methodologically moderate
[36–42, 44].
Approach Goals
Much like avoidance goals, approach goals to disclosure
varied considerably. Within romantic partnerships, partici-
pants highlighted the need for selecting the “right person”
to whom one could disclose, which was often determined by
the participants’ trust placed in their romantic/sexual partner
[36]. Within romantic/sexual relationships, trust was deter-
mined by the length of the relationship, the quality of the
relationship, and the level of intimacy experienced between
the partners [36, 40]. Other relationship-specific approach
goals included making partners aware of their HIV status
before having sexual intercourse [29] and testing the strength
of the relationship through disclosure [37]. In other relation-
ships, youth sometimes disclosed out of a sense of loyalty
[30] and to experience the trust and support they previously
provided their confidant [37]. For some youth, disclosure to
caregivers was related to a need for financial support [34]
while others believed disclosure to their caregiver was inevi-
table [34, 40]. Young women ages 18-24 with a history of
substance abuse believed disclosure was a moral obligation
[36] while others disclosed out of a feeling of pressure or in
response to questions from friends [30]. A desire to support
and educate others was also a motivator for disclosure. Inter-
estingly, a desire to end feelings of sadness and guilt around
not disclosing also motivated some to disclose [30]. Others
reported their impulsiveness as a reason for self-disclosure
[30]. This may indicate that not all disclosure events are
decided beforehand. Additionally, some youth reported dis-
closing because of medication-related questions, a need to
explain work or social absences, and concerns about their
health [30]. The quality of studies reporting approach goals
was evenly split between methodologically weak [29, 30, 34]
and methodologically moderate studies [36, 37, 40].
Disclosure Event
According to DPM, the disclosure event includes both the
content and the reaction of the confidant. Most studies in
this review did not include information on the content of the
disclosure events, however, in one study some women used
hypothetical scenarios to assess their partner’s responses
and determine if there were any negative consequences to
disclosure [36]. In addition, several studies reported the con-
fidant’s reaction to the disclosure including both positive and
negative responses. Youth commonly reported feelings of
closeness and acceptance from romantic/sexual partners and
other confidants [29, 30, 37, 39]. Although romantic/sexual
partners were often supportive throughout and immedi-
ately following the disclosure process, many youth reported
experiencing rejection and termination of romantic relation-
ships post-disclosure, which was associated with feelings of
abandonment [18, 29, 30, 36, 41]. In some instances, youth
reported remaining in romantic partnerships out of the fear
of unauthorized disclosure to others by their romantic/sexual
partners [18]. These youth also expressed a perceived loss of
innocence, desirability, and inviolability that is commonly
associated with living with HIV [18]. In a similar study,
young women living with HIV reported remaining in rela-
tionships they perceived as “detrimental” due to the emo-
tional burden and fear of engaging in the disclosure process
with a new romantic/sexual partner [36]. In these types of
relationships, some youth reported experiencing emotional
and verbal abuse, including threats of unauthorized disclo-
sure by their partners. Most studies included in this section
were of moderate methodological quality [36, 37, 39, 41],
while others were methodologically weak [18, 29, 30].
Mediating Processes andOutcomes
DPM specifies that disclosure may impact individual,
dyadic, and social outcomes. The impact of disclosure on
these outcomes is often mediated through 3 processes (a)
social support, (b) alleviation of inhibition, and (c) changes
in social information [45]. Within this review, social support
was the most commonly reported mediating process [19, 34,
41, 43]. Social support from family members and caregiv-
ers was exhibited in the form of caring behaviors, financial
support, and medication reminders [34]. In addition, social
support served as a moderator by acting as a buffer to mental
health symptoms associated with self-disclosure [43]. Essen-
tially, social support served as a mediating and a moderat-
ing variable. Although social support is characterized as a
mediating process within DPM, it is also an approach goal
as many youth reported disclosing their status as a means of
gaining support from family, friends, and romantic/sexual
partners [28, 34, 41]. A lack of inhibition was seen in youth
who viewed HIV as a normal part of life. This group of
youth may disclose their status and possibly experience the
benefits associated with disclosure [40]. Of the 6 studies
reporting mediating processes and outcomes, 3 were scored
as methodologically moderate [40, 41, 43] and 3 were scored
as methodologically weak [19, 28, 34].
AIDS and Behavior
1 3
Individual Outcomes
Individual outcomes as described by DPM included changes
to a person’s psychological and physiological health as a
result of disclosure.
Positive Psychological Outcomes
Psychological benefits to self-disclosure overlapped with
some of the antecedent goals discussed earlier. This indi-
cates that some youth may disclose in order to receive social
and emotional benefits [34] or may choose to disclose in a
manner that supports the likelihood of positive outcomes,
making the disclosure event critical [45]. Youth who did
disclose experienced improvements in their social self-com-
petence [19] and expressed feelings of relief [37], as well
as positive feelings associated with having shared impor-
tant information with others [37]. Studies reporting positive
psychological outcomes were methodologically weak [19,
34] with the exception of 1 study that was methodologically
moderate [37].
Negative Psychological Outcomes
Despite the benefits associated with self-disclosure, youth
also experienced a broad range of negative outcomes. While
greater disclosure led to increased social support, youth who
experienced public disclosure via television, newspapers or
magazines reported a lower self-concept [19]. Negative men-
tal health symptoms were a common outcome associated
with disclosure [23, 31, 39, 43]. In one study [23], authors
reported that caregivers scored youths’ anxiety levels higher
6months following disclosure compared to youth who had
not yet disclosed. In another study, stress and mental health
symptoms were seen in those who had disclosed to an
acquaintance within the last 3months [43]. Among youth
who disclosed, some experienced feelings of depression and
withdrawal, as well as internalized self-blame [39]. Finally,
some youth expressed negative feelings associated with the
stigma and discrimination they received after disclosing
[42]. Studies included in this section were a mix of meth-
odologically weak [19, 23, 31] and moderate quality studies
[39, 42, 43].
Individual Behavioral Outcomes
Self-disclosure was associated with delaying dating and/
or abstaining from sex for adolescents living with HIV
[28, 29]. For others, it was associated with an increase in
medication adherence, mediated through increased social
support [39]. Finally, self-disclosure was also associated
with a decrease in delinquency and aggression [19]. Only
one methodologically moderate study reported individual
behavioral outcomes [39] and the others were found to be
methodologically weak [19, 28, 29].
Physiological Outcomes
Most studies did not investigate the physiological outcomes
associated with self-disclosure. However, in 1 study, the
more people to whom youth disclosed, the higher their
CD4 count. This was mediated through improved medica-
tion adherence [20]. Conversely, another study showed that
youth ages 8-17 who had disclosed their status experienced a
lower CD4 count and increased viral load, and were likely to
have been recently hospitalized [23]. Both studies included
here were scored as methodologically weak and were con-
ducted in the U.S. [20, 23].
Dyadic Outcomes
Positive Behavioral Outcomes
Behavioral outcomes related to disclosure varied depending
on the timing of disclosure and the reaction of confidants.
In some studies, self-disclosure was associated with changes
in sexual behaviors [28, 29, 31, 36]. While abstinence is
considered an individual behavior, sexual behaviors within
a romantic partnership are considered dyadic in this review.
Findings showed that awareness of one’s HIV status was
associated with increased condom use; however, condom use
still remained inconsistent with a need for improved condom
negotiation skills among YLWH [18]. Clum etal. [36] found
that condom use prior to disclosure was most predictive of
condom use post disclosure rather than if one had disclosed
their status. In addition, young women living with HIV who
were assertive about condom use were more likely to use
condoms than women who were less assertive [36]. A quali-
tative study conducted with 7 participants showed that, for
some, HIV disclosure was associated with increased condom
use [31]. To further support this, other studies identified
that disclosure, particularly to family members, was associ-
ated with GBMSM engaging in protected anal [21, 44] and
oral sex [44]. Findings here were from studies conducted
in North America, Europe, and Africa and were not seen in
the small sample of studies from other regions of the globe.
Most studies in this sub section were scored as methodo-
logically weak [18, 21, 28, 29, 31], but some were scored as
methodologically moderate [36, 44].
Negative Behavioral Outcomes
One negative behavioral outcome after disclosure was the
perceived willingness of male partners to engage in con-
dom-less sexual intercourse with their partners who were
living with HIV. This was found in both heterosexual [31]
AIDS and Behavior
1 3
and same-sex relationships [21]. Disclosure of serostatus in
those studies was linked to a desire for partners to bypass
condom use. For some, this behavior was believed to be
associated with increased intimacy, feelings of invulner-
ability, and a lack of education about HIV [36]. In other
studies, HIV disclosure was not associated with the number
of sexual partners or condom use. This finding was seen in
two methodologically weak studies, one conducted in Asia
and another in North America [14, 22]. Among the studies
reported here, 4 were scored as methodologically weak [14,
21, 22, 31] and 1 was scored as methodologically moderate
[36].
Feedback Loop
The DPM model suggests that one disclosure event can
affect subsequent disclosure through a feedback loop. This
is seen in how previous disclosures led some youth to antici-
pate fear and stigmatization. Many of the avoidance goals
reported were due to previous disclosure experiences. How-
ever, no known studies have specifically investigated dis-
closure events and how they affect subsequent disclosures.
Discussion
This review performed 2 distinct and important tasks. It sys-
tematically assessed the methodological quality of studies
incorporated in the synthesis, and it summarized the litera-
ture on youth HIV self-disclosure using a comprehensive
theory-driven approach. In this review, we applied a multi-
dimensional model consisting of 5 domains to classify the
available findings.
The DPM is an appropriate framework for understand-
ing the decision making and outcome processes associated
with self-disclosure. Consistent with other reviews focused
on youth [3] as well as reviews not limited to youth studies
[46], fear and stigma emerged as common avoidance goals
preventing disclosure. Although not described in Thoth etal.
[3] review of youth disclosure studies, the current review
suggests that concern for the impact of disclosure on the
well-being of others was an avoidance goal leading to non-
disclosure, which is consistent with Evangeli and Wroe’s
[46] review. Findings from this review also suggest disclo-
sure was less common in casual, as opposed to, committed
relationships, similar to findings reported by Thoth etal.
[3]. Although less common, the current review revealed
that low viral load was a barrier to disclosure in at least 1
study. Youth with low viral loads may perceive themselves
as unlikely to transmit HIV to their sexual partner and may
not consider it necessary to disclose their status especially
if a previous sexual partner did not contract HIV.
Thoth etal. [3] did not identify approach goals, per se,
whereas the current review revealed a variety of relationship
factors that facilitated disclosure including the perceived
nature of the relationship and the level of trust within the
partnership, particularly when disclosing to sexual partners
(e.g., intimacy between partners). Although the desire for
social support has commonly been cited as a factor support-
ing disclosure, which was confirmed in this review, we also
found that the need for financial support was an approach
goal for disclosure to family members. Similar to Chaudoir,
Fisher, and Simoni’s [45] finding that self-blame facilitated
disclosure, we found that guilt around non-disclosure was
a facilitator. Concern about the legality of non-disclosure
(i.e., HIV criminalization laws) was not explored as an ante-
cedent goal to disclosure in the current review or similar
reviews. However, previous research [47] found fear of legal
repercussions was not the most important factor related to
disclosure among female YLWH who were aware of their
state’s HIV criminalization laws.
Benefits experienced through self-disclosure were pre-
dominantly associated with increased social support, which
is characterized as a mediating process within the DPM.
Support manifested as medication reminders, financial sup-
port, and other acts of care. Youth who disclosed to fam-
ily members and others who were supportive experienced
improved medication adherence, which was associated with
higher CD4+ counts. These findings were consistent with
another study conducted among adults showing increased
medication adherence post disclosure [48]. While this
was not mediated by practical support such as medication
reminders, it may be associated with other forms of social
support.
Along with improving medication adherence, social sup-
port also moderated mental health symptoms. In addition,
disclosure to main romantic/sexual partners who were sup-
portive was often associated with increased condom use,
including among YGBMSM who face a disproportionate
burden of HIV. For younger adolescents, disclosure was
associated with abstaining from or delaying sex. Further-
more, disclosure during hospitalization may have been
related to the youth’s poor health status.
Conversely, youth who disclosed when they were not hos-
pitalized or ill had increased CD4+ counts. It is possible
that youth who were hospitalized due to HIV-related com-
plications felt the need to disclose their status to those who
inquired. This need to disclose due to illness was reported
earlier as an antecedent goal of HIV self-disclosure. How-
ever, as described by Chaudoir, Fisher, and Simoni [45],
the relationship between disclosure and disease progres-
sion remains unclear as few studies have investigated the
relationship.
Despite increasing condom use among some romantic/
sexual partners, disclosure sometimes was associated with
AIDS and Behavior
1 3
inconsistent condom use. In fact, disclosure was not a pri-
mary predictor of condom use. Instead, condom use behav-
iors prior to disclosure were more predictive of condom use
post-disclosure. This result emphasizes the need to continue
risk reduction and skill-based efforts to support healthy sex-
ual behaviors among youth. As reported by youth, increased
intimacy from disclosure was sometimes associated with
male partners wishing to forgo condoms. However, part-
ners were not interviewed in this study; therefore, findings
are limited to the perceptions of study participants. Further-
more, most studies did not report the serostatus of partners
who wished to engage in condom-less sexual behaviors
which would provide important contextual information.
In a study exploring HIV disclosure and sexual behaviors
among GBMSM, researchers identified that self-disclosure
was associated with both positive and negative sexual behav-
iors [45, 49]. A common adverse outcome experienced by
youth was termination of a romantic relationship. Youth
also faced emotional abuse and threats of unauthorized dis-
closures from their romantic/sexual partners. This raises
concerns about the impact of HIV criminalization laws on
youth at risk for physical and emotional abuse within their
romantic relationships. Youth need supportive environments
in which to disclose as well as skills that may be useful in
the disclosure process. Youth living in states or nations with
HIV criminalization laws have to balance the obligation to
disclose and their personal safety. The stigma and misinfor-
mation associated with HIV make this a difficult task. Based
on the DPM framework, youth goals of disclosure should be
approach focused which has the potential to increase positive
and more desirable outcomes throughout and following the
disclosure process [4].
Limitations
Despite its contributions, this review has some limitations.
First, the search strategies we employed may have led us
to overlook relevant and important studies, especially those
neither indexed in the databases searched nor cited in the
reviewed papers. Second, the study did not include grey
literature nor studies published in languages other than
English. Therefore, important findings may have been over-
looked. Third, most studies included in the review were
cross-sectional and used a convenience sample which may
limit the generalizability of the findings.
Additionally, the study findings on participants’ romantic/
sexual partners are limited to the perceptions of participants
and may differ from the actual experiences or behaviors of
their partners. Therefore, any interpretation of findings
should keep that limitation in mind. In addition, the broad
range of studies spanning cultural groups and geographic
locations may also limit the generalizability of study find-
ings. While a strength of the review is the inclusion of
studies conducted across the globe, this presents limitations
to the generalizability. While throughout the results the
authors have made attempts to highlight findings that were
unique to a region or cultural group, all findings should be
interpreted through a cultural lens when possible.
Finally, this study summarized a review of the research
literature, specifically and not of the practice-related lit-
erature regarding adolescent HIV disclosure. Moreover,
this review is only as reliable as the methods used in the
original studies. Although all studies provided important
and relevant information to the field of HIV disclosure, no
articles were scored as methodologically strong. Therefore,
any limitations of the primary study designs are also inher-
ent in this review. This review also does not address issues
of publication bias, where studies showing strong relation-
ships between the variables of interest are more likely to be
published.
Recommendations forResearch andPractice
The results of this review indicate some areas of concern.
First, the lack of intervention studies around HIV self-disclo-
sure events is concerning and indicates that the literature has
remained quite stagnant in improving disclosure techniques
and, consequently, the facilitation of positive outcomes. The
literature can benefit from assessing the disclosure events
more closely and providing feedback to improve the out-
comes of self-disclosure. Second, the methodological assess-
ments shed light on the quality of the academic literature.
Unfortunately, the majority of studies were assessed as weak
indicating that there is a need to improve the methodological
rigor of youth HIV self-disclosure studies. Also, as noted in
the limitations, most studies were cross-sectional in nature
and often used a convenience sample. These limitations led
to challenges when interpreting the findings. In addition,
while much literature exists on disclosure among adults,
there remain many gaps in knowledge about disclosure
among youth. Marhefka, Chenneville, and Turner [50] pro-
vided a comprehensive overview of HIV disclosure research
in pediatric populations, but acknowledge that research
focused on youth populations is relatively recent and has
not yet been fully developed. The authors recognize the dif-
ficulty and sensitivity of assessing HIV disclosure among
youth and acknowledge that this may contribute to the lim-
ited breadth of research in this area. However, considera-
tions for how researchers investigate the disclosure event
and the subsequent outcomes is warranted. Currently, there
are no known studies examining disclosure and its impact
on subsequent disclosures. Therefore, the literature can ben-
efit from longitudinal approaches assessing self-disclosure.
Despite an increase in studies assessing disclosure, there is
still more that needs to be understood such as the physiologi-
cal outcomes of disclosure and the components of a positive
AIDS and Behavior
1 3
disclosure event among youth. There also is no widely-used
standardized measure to assess HIV-related disclosure
behaviors. Research in this area is therefore needed.
Further, with advances in HIV treatment, little is known
about how the availability of pre- and post-exposure prophy-
laxis affects decisions about disclosure to sexual partners
generally and, specifically, among youth. While existing
research suggests there may be benefits to disclosure, there
also may be detriments. Randomized controlled trials are
needed to assess the efficacy of disclosure interventions
incorporating the knowledge provided by the DPM, and
longitudinal studies are needed to determine the long-term
impact of disclosure on youth. Given the unique issues fac-
ing youth with vertically versus horizontally acquired HIV,
intervention studies should address the impact of these dif-
ferences as well as the impact of the cultural context on dis-
closure. More disclosure studies are needed in low-to-middle
income countries [51].
It is important for health and mental health care providers
working with YLWH around issues of disclosure to take into
consideration antecedent goals as well as perceived posi-
tive and negative outcomes. Unfortunately, guidelines for
evidence-based or even structured disclosure interventions
are limited [50]. Nonetheless, it is important for practition-
ers to be aware of the complexities of disclosure and the
fact that disclosure is a dynamic process [50, 51]. This sug-
gests a need for peer mentors and/or other paraprofessionals
to be involved in the disclosure process, given the limited
resources that exist in many health and mental healthcare
settings.
Acknowledgements The authors would like to thank Hunter Drake and
Courtney Janzen for their contributions to this study.
Compliance with Ethical Standards
Conflict of interest The authors declare that they have no conflict of
interest.
Ethical Approval This article does not contain any studies with human
participants performed by any of the authors.
Informed Consent For this type of study, no informed consent is
required.
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