Disclosure by Men Who have Sex with Men to Immediate Family over
SEROVICH, Ph.D.,1 ANNA J. ESBENSEN, Ph.D.,2
and TINA L. MASON, Ph.D.3
Department of Human Development and Family Science,
Department of Psychology,
Department of Human Development and Family Science, The Ohio
State University, Columbus, Ohio.
reprint requests to:
Dr. Julianne Serovitch, 135 Campbell Hall, 1787 Neil Avenue, The
Ohio State University Columbus, OH 43210, E-mail:email@example.com
Previous researchers have comprehensively documented rates of
HIV disclosure to family at discrete time periods yet none have
taken a dynamic approach to this phenomenon. The purpose of this
study was to address the trajectory of HIV serostatus disclosure
to family members. Time to disclosure was analyzed from data
provided by 135 HIV-positive men who have sex with men. Results
indicated that mothers remain the family member to be told in
greatest proportion, yet the proportion of family members told
changes over time in a different manner than presented in
earlier research. Additionally, the rate at which family members
are told at all time points generally does not significantly
differ from each other when accounting for characteristics of
participants and family members
IN STUDIES OF HIV disclosures by men who
have sex with men (MSM) rates have been found to vary by family
member. Family members most likely to receive HIV information
appear to be mothers1,2
Fathers, siblings, and grandparents appear to be the least
likely to be informed.1–5
Understanding disclosure to family members is important because
disclosure is imperative for the acquisition of support and this
support has been demonstrated to improve the lives of those
living with HIV.6–9
Support buffers stress-related or stress-inducing crises, such
as physical distress,8
and psychological well-being.8,10
One way the buffering effect of social support and coping may
operate is by alleviating depressive symptoms.8
More recent evidence also suggests that social support can have
a positive impact on clinical outcomes for HIV-positive persons.11
Studies of specific providers of general
support suggest that family members, when compared with friends,
are not viewed as helpful to HIV-positive MSM.6,12–15
There are numerous reasons this may be the case including
whether one or the other group includes HIV-positive members.
Primarily, however, differences may be a methodological one. For
example, many of these studies13,14,16
utilized differing types of structured interviews to evaluate
support. Primarily these methods entail participants listing
network members who provided various types of assistance. Using
these procedures has generated data indicating a greater
proportion of friends than family as providers of support.
Comparing friend and family support by these means, however, may
be influenced by a ceiling effect.16
That is, nuclear family is typically limited to an average of
four to five individuals, whereas friends are unlimited in
This becomes problematic in light of family
social support being linked to sexual risk-taking behaviors of
MSM with lower levels of support associated with greater risk
and lack of disclosure to sexual partners.19
Family support has also been significantly associated with the
intention to limit sexual partners in the future, remain
monogamous, and abstain from sexual intercourse.16
One generally accepted theory of HIV
disclosure contends that disease progression triggers
According to the disease progression theory, individuals
disclose their HIV diagnosis as they become increasingly ill
because keeping it a secret becomes complicated.20,21
That is, disease progression results in hospitalizations and
health deterioration that requires individuals to explain their
Furthermore, if death is imminent or individuals fear they will
need additional assistance to manage the final stages of their
illness, they may disclose as a means of accessing requisite
The heuristic utility of the disease
progression theory has been substantiated through numerous
For example, Marks and colleagues4
documented that as overall symptom severity increased,
disclosure to family members increased. Hays and colleagues3
found symptomatic men were more likely to disclose their HIV
status to family than asymptomatic men. Disease severity and
time since testing for HIV have also been demonstrated to be
positively related to disclosure.2
Using time since diagnosis and symptomatology, Mansergh et al.5
found rates of disclosure were higher among symptomatic than
asymptomatic men and increased with time since diagnosis,
suggesting that these are interrelated. These differences were
significant for predicting disclosure to mothers, fathers,
sisters, and brothers, thereby providing persuasive evidence for
the disease progression theory.
More recently, HIV therapies have advanced
considerably resulting in many individuals failing to exhibit a
standard pattern of declining health. In fact, while numerous
difficulties have been associated with HIV infection, the
disease is still considered by many as chronic yet manageable.23–25
HIV/AIDS treatment advances, in particular that of highly active
anti-retroviral therapy (HAART), may play a role in decisions
regarding disclosure. For many with HIV on a HAART regimen, the
virus has become completely undetectable, however, given the
side effects of HIV medications, toxicity, and the problems of
positive outcomes such as undetectable virus does not hold true
for many HIV-positive individuals.27
In fact, more recent evidence suggests that timing of HAART
might also impact mortality outcomes.28
These tumultuous changes may mean that men may temporarily or
indefinitely wait to disclose to family members and calls into
question the suitability of the disease progression theory.
Given medical advances it is plausible that those infected may
have adapted their disclosure decisions accordingly.
In a more recent test of the disease
progression theory, a relationship between disease progression
and disclosure was not found, suggesting that disease
progression may not play a central role in the decision to
disclose an HIV diagnosis.29
In this study, it was suggested that individuals are more likely
to evaluate the outcome of disclosure to particular family
members and based disclosure decision on the weighting of both
positive and negative consequences of such an action. That is,
individuals weigh the rewards and costs associated with the need
for disclosure to each family member. Until the rewards of
disclosure outweigh possible repercussions, disclosure does not
This alternative explanation for HIV disclosure has also found
support in the literature.4,30,31
These researchers contend that individuals who are HIV-positive
contemplate the need for privacy and disclosure in determining
whether to disclose an HIV-positive diagnosis. Factors to be
deliberated are poorly understood, yet we contend that this
decision-making process may be based on numerous factors related
to either the family member or HIV-positive person. Family
member characteristics might include the age of the family
member at the time of disclosure, satisfaction with the
relationships, intimacy with individual,3
race or ethnicity, and the role of family member.2–5,32
For example, the aforementioned studies have found that of
family members, mothers and sisters are the most likely to be
told of an HIV diagnosis. Participant characteristics might
include age of the participant at the time of disclosure to a
particular family member, race or ethnicity of participant,2,33
and whether there were any prior reported disclosures to other
family members. For example, Mason, et al.2
reported that Caucasian men were significantly more likely to
disclose their HIV status to family members and sexual partners
than Latino men. Likewise, Mason and colleagues33
reported that African Americans disclosed to significantly fewer
family members than European Americans
Previous researchers have comprehensively documented rates of
disclosure via point prevalence studies and none have taken an
over-time view of this phenomenon. In addition, many of these
studies were conducted in the early 1990s before the
introduction of anti-retroviral therapies. These changes have
most assuredly resulted in alterations to social support needs
and requirements as well as disclosure patterns. Thus, an
updated and more comprehensive investigation of this phenomenon
is warranted. The purpose of this study is to investigate the
trajectory of HIV serostatus disclosure to specific immediate
family members. To this end, the influence of disease
progression, family network characteristics, and participant
characteristic on rates of disclosure will be investigated
MATERIALS AND METHODS
Participants for this study were 135
HIV-positive gay men recruited primarily from an AIDS Clinical
Trials Unit (ACTU) associated with a large midwestern
university. Recruitment began in February 1998 and continued
through July 2000. Attending physicians and medical staff
approached potential participants and informed them about the
study. Eligible participants included HIV-positive men who
reported either being gay or having sex with other men and were
18 years of age or older. The actual number of patients
approached was not documented; hence, a final participation rate
could not be computed.
Participants were primarily single (i.e.,
not partnered; 66%), Caucasian (86%) men between the ages of 21
and 61 (M = 38 years, standard deviation [SD] = 7), who
contracted HIV from unsafe sexual practices (80%). At entry into
the study, participants had been diagnosed with HIV ranging from
1 month to 16 years (M = 83 months, SD = 54). These men
were well-educated with 57% having had some college education or
a bachelor’s degree and 23% having completed some graduate work.
More than 59% of the participants were employed, earning an
average income of $20,000 (R = $0–$90,000).
Participants were involved in a larger,
longitudinal study of HIV disclosure that involved completing
questionnaires regarding mental health, physical health, social
support, disease progression, and sexual risk-taking behaviors
once every 6 months for 3 years resulting in seven data
collection points. While the parent study involved collecting
data longitudinally, the data used in this study were
retrospective in nature. Participants completed an initial
interview and questionnaire at the beginning of the study (phase
1). Yearly men took part in a structured interview, completed a
questionnaire, and sexual behavior calendar (phases 3, 5, and
7). Six months into each yearly wave of data collection
participants returned to fill out a questionnaire and sexual
behavior calendar (phases 2, 4, and 6). Participants were
interviewed by trained doctoral students about their social
network using an adaptation of Barrera’s Arizona Social Support
Interview Schedule (ASSIS).34
Participants were asked with whom they would discuss personal
issues, receive advice, borrow money, invite to socialize,
garner positive feedback, request physical assistance, and
experience negative interactions (i.e., argue or fight). In
addition, they were asked with whom they had sexual interactions
within the past 6 months. Structured interviews took between 40
and 90 minutes and questionnaires took between 30 and 60 minutes
From each structured interview a list of
social support network members (those individuals mentioned
during the ASSIS interview) was constructed. Demographic data
(i.e., age, gender, and ethnicity) of each network member and
information including their knowledge of participant’s HIV
status, the length of relationship, and the participant’s
satisfaction with each relationship was obtained. Then,
participants were asked if each individual in their social
network, including their immediate family, knew of their
diagnosis. If a particular person had knowledge of the
diagnosis, we first probed as to who did the disclosing. Because
second-hand disclosure can happen easily in families
(particularly between parents), interviewers spent a considering
time probing the nature of each disclosure episode. Typical
responses included, “I did,” “My mother did,” “I don’t know.” If
the participant personally disclosed, the month and year of that
disclosure was obtained. If the participant was unsure if the
network member knew, this was noted and if the network member
did not know of the diagnosis, it was recorded as a
nondisclosure. Ages at the time of disclosure for both the
participant and their network member were calculated for each
As noted earlier, data reported here is
retrospective in nature, and therefore some caution is
advisable. However, when the data were collected it was
understood that such information could be inherently flawed so
training procedures for data collection and handling were
instituted to minimize error. First, considerable time was given
for participants to tell their disclosure story. Given this was
a memorable event, such reconstruction of events came easily to
most. Interviewers were trained to allow participants the
opportunity to recollect the events surrounding their testing
and diagnosis. Probes such as, “Where did you get tested?” and
“Who was with you when you found out?” were offered. This
sufficiently contextualized the event for many. Second, for
those who were uncertain as to an exact month but remembered the
year, probes such as, “Was it winter, spring, summer, or fall?”
“Was it before or after Christmas?” were offered to assist with
recall. Third, if the person seemed to be guessing or did not
know for sure, the interviewer further contextualized the
situation by including probes such as, “Where were you?” “Was it
over the phone or in person?,” “How did they respond?” This
allowed for the determination if a disclosure actually occurred
or if the network member found out through second-hand
disclosure (e.g., family member, family friend, gossip, or
guessed). If the participant was certain that they had disclosed
their status but could not recall a year, again attempts were
made by the interviewer to assist with memory recall. Triggers,
such as, “Where were you living at the time?” or “Where were you
working?” all assisted with attempts to jog the participant’s
memory. In some instances, family members may have found out
accidentally (e.g., found medication, overheard phone messages).
These instances were not counted as disclosure. For this study,
in order to be classified as a disclosure, the participant
themselves must have actually disclosed their HIV status to that
HIV status and date of diagnosis was
confirmed through medical records.
The dependent variable of interest is the
event of disclosure by an individual with HIV of his serostatus
to a family member. Time to disclosure to each family member is
measured in months from the date of HIV infection to the date of
disclosure of HIV serostatus. Survival analysis is an
appropriate statistical methodology for analyzing these data
because the data meet all necessary requirements of a clear time
origin, a scale for measuring time, and a clear end point.
Survival analysis provides an estimate of the proportion of the
sample that would have been disclosed to at various times.
Family members who have not been told of the participant’s HIV
status were treated as “censored” data. Censored data, however,
are not considered missing data. Rather, labeling them censored
takes into account that although the participant did not
disclose their serostatus to a family member, there is the
potential that they could disclose this information to this
individual in the future.
member. The focus of the present study was on
disclosure of HIV status to family members. Of the 135
participants, 116 reported a mother or stepmother and 100
reported a father or stepfather. These men also reported having
188 brothers or stepbrothers and 193 sisters or stepsisters (Table
1). Family members were primarily Caucasian (mothers,
79%; fathers, 82%; sisters, 63%; brothers, 68%). Mothers ranged
in age from 34 to 92 (M 5 61 years, SD 5 9), fathers from 39 to
92 (M 5 64 years, SD 5 10), sisters from 12 to 72 (M 5 37 years,
SD 5 10) and brothers from 8 to 66 (M 5 39 years, SD 5 9). Of
the 597 family members, only 4 individuals were disclosed to
after the participant entered into the research study.
Family members were excluded from the
analyses if they had been informed of the participant’s
serostatus by someone other than the participant, or if a valid
date of disclosure was unavailable or unreliable. Family members
identified as deceased prior to the participant’s diagnosis with
HIV were excluded. Of the 116 mothers identified, 16 had been
told by someone else, and 3 were deceased. Of the 100 fathers
identified, 26 had been told by someone else and 6 were
deceased. Of the siblings, 64 sisters and 61 brothers had been
told by someone else. This resulted in a final sample size of
421 family members.
model. Two variables related to disease progression
were included in the model. First is whether the participant was
diagnosed with HIV preadvent or postadvent of HAART. Second is
for how long (in months) the individual had been diagnosed with
HIV at entry into the study.
characteristics. Demographic information provided in
the structured interview was included in the model. The age of
the family member at the time of disclosure, current
satisfaction with the relationship using a 1–5 Likert-type
rating scale ranging from “very satisfied” (1) to “very
dissatisfied” (5), and race were variables entered in this
analysis. It should be noted that while potentially important,
the HIV status of family members was not collected.
Participant characteristics. The age of the
participant at the time of disclosure to each family member and
whether there was any reported prior disclosure to other family
members were entered in the analysis. The latter was entered as
a time-varying covariate.
All analyses were conducted using STATA® version 8.0
(Stata, College Station, TX).35
STATA is a statistical program well suited for survival
analysis. Kaplan-Meier–type cumulative disclosure curves
stratified by family member are estimated and the log rank test
was used to test the equality of the disclosure curves. A
multivariable Cox proportional hazard regression model was used
to estimate the hazard ratios and standard errors. STATA uses a
shared frailty approach that is a semiparametric random effects
model that can account for within group correlation. The
distribution of the baseline hazard function is not specified
while the frailties or random effects are gamma distributed with
a mean of one and a variance of θ which is estimated from the
data and is testable. If the null hypothesis (θ = 0) is rejected
then the correlation is considered significant and cannot be
ignored. Thus, the non-independence of one participant providing
information regarding several family members is controlled for
in the statistical analysis. In this study the frailty is the
participant’s degree of willingness to disclose to family
In order to investigate the trajectory of
HIV serostatus disclosure to specific immediate family members,
data were analyzed separately by family member using
Kaplan-Meier cumulative disclosure curves. Of the 597 family
members reported by these men, exactly 50% had been told about
the HIV status of the participant. Sixty-seven percent of
mothers, 47% of fathers, 50% of sisters and 41% of brothers had
been told of the participant’s HIV status. These percentages
increase when calculated on the 421 family members, which
excludes those told by someone else. According to this analysis,
it would be expected that 50% of mothers would be disclosed to
within 9–10 months. In the same time period, it would be
expected that approximately 40% of fathers, sisters or brothers
would be disclosed to regarding HIV status. A graphic
representation of cumulative disclosure curve for family members
is shown in
In order to investigate the influence of
family role in the prediction of HIV disclosure over time, data
were analyzed using Cox proportional hazard regression model.
This analysis provided estimates of the hazard rate (relative
risk) without having to specify a baseline hazard. Family role
was coded using dummy variables. In comparison to mothers,
sisters, and brothers, fathers served as the comparison group.
The other family comparison pairs are displayed in Table 2.
Within-group correlations are controlled for in all models and
in all cases the null hypothesis was rejected that θ = 0
Hazard Ratios and Standard Errors of HIV-Serostatus
Disclosure to Family Member
Race of family
Age of family
Age of participant
of θ (1 df)
aThe first family member
listed serves as the referent group.
bHazard ratios and standard
errors were calculated separately based upon dummy coding
with father as the referent group.
The effect of family role (model 1) on the
time to disclosure is shown in Table 2. The hazard ratios were
only statistically significant for comparisons of fathers to
mothers (2.00) and brothers (1.64). These ratios indicated that
at all time points after HIV diagnosis, mothers had a 100% and
brothers had a 64% greater rate of being disclosed to in
comparison to fathers. This is not the same as saying that
mothers are twice as likely as fathers to be disclosed to, nor
the same as saying that mothers are told more often.
Statistically significant differences were not found for the
hazard rates of any other family member comparisons.
The family member model is elaborated upon
in model 2 by testing the influence of disease progression on
disclosure to family. Whether the participant was diagnosed pre-HAART
or post-HAART and the length of diagnosis at entry to the study
were entered into the analysis. The hazard ratios among family
members remain similar, and again, statistically significant
differences are only found for the hazard ratios between fathers
and mothers, and fathers and brothers. Neither the timing of the
HIV diagnosis (pre-/post-HAART) nor the length of diagnosis
significantly influenced the hazard rates. That is to say that
at all points in time, being diagnosed before or after HAART did
not significantly alter the rate of disclosing one’s HIV
serostatus. Also, how long an individual was diagnosed with HIV
at entry to the study did not alter the rate of HIV disclosure.
Characteristics of the participant’s family
network were added to the analysis in model 3, substituting for
the disease variables. The hazard rates for age of the family
member and current level of satisfaction were statistically
significant. At all points after HIV diagnosis, being one year
older was associated with a lesser risk of disclosure by 4%. As
current satisfaction with the family member decreased by one
point (less current satisfaction), the hazard rate increased by
2%. Race did not significantly impact the hazard rate, however,
this may be due to a underrepresentation of minorities in the
sample. With the addition of the network characteristics, the
impact of family role changes. No longer are the hazard rates
between fathers and mothers or brothers statistically
significant. Instead, results demonstrated that at all time
points mothers have a 187% greater rate of being told than
sisters, and a 134% greater rate of being told than brothers. In
addition, fathers had a 133% lesser rate (inverse of 0.43) of
being told than sisters.
In model 4, the network characteristics
were removed, and the impact of participant characteristics were
assessed. Both the age of the participant at the time of
disclosure and whether they had disclosed prior to other family
members significantly impacted the hazard rate. At all time
points after HIV diagnosis, the participant being one year older
was associated with a lesser rate of disclosure by 6%. As the
participant moved from having no prior disclosure to having
prior disclosure to family members, the rate of disclosure was
85% less. With the addition of participant characteristics the
impact of family role changes again. Only the relative risk of
brothers compared to sisters was statistically significant. At
all points in time since diagnosis, brothers had a 60% greater
risk of being told.
the final model, both network (excluding race) and participant
characteristics were combined with family role. Only the
relative risk of brothers compared to sisters and the impact of
prior disclosure significantly influenced the hazard rates. At
all points in time since HIV diagnosis, prior disclosure to
family members was associated with 85% lower rate of being
disclosed to, and brothers had a 60% greater rate as compared to
Proportions of HIV serostatus disclosure to
family members have been examined extensively, however, much of
this research was completed in the early to mid 1990’s and all
were examined using one, sometimes two data collection points.2–4,13,36
Therefore, while disclosure proportions at discrete time points
are generally understood, longer-term disclosure estimates have
not been estimated. In fact, this appears to be the first
analysis of patterns of HIV disclosure to family members.
Looking at disclosure proportions in this manner is important
because it may provide a better estimate of overall disclosure
patterns to family.
Interpretative caution may be required
because of the retrospective nature of this data. Although
participants were carefully guided through the disclosure
interview process, it is plausible that erroneous data was
provided. This might be particularly true for participants
diagnosed several years prior to the study. To the best of our
knowledge, however, this is the only effort to attempt to
capture a very difficult family process occurring at a time of
great discrimination, high anxiety, and emotion. While a
prospective account is most desirable, unfortunately, such data
will never be available for this time period.
From the data gathered in point prevalence
researchers have indicated that those most likely to receive
information about HIV status were mothers and sisters in
contrast to fathers and brothers. The current assessment of
cumulative disclosure curves concurs with previous researchers
as mothers remain the most likely to be recipients of HIV status
information (Fig 1).
In this investigation sisters’
disclosure patterns, however, overlapped with that of brothers.
During the first year of diagnosis, disclosure patterns to
sisters were greater than to brothers. But between 1 and 3 years
after diagnosis, disclosure patterns to brothers are greater
than to sisters. One explanation for the disparity from other
studies is that the timing of second hand disclosure to siblings
may be influencing these cumulative disclosure rates. Overall,
however, mothers tend to be told first and proportions of her
knowing remain elevated over other family members across time.
One explanation for the greater tendency
for mothers to be disclosed to may be the female demeanor. The
tendency for mothers to be the recipient of disclosure
information could be attributed to them being viewed as more
sympathetic and nurturing. Mothers may also be seen as more
accepting of alternative lifestyles or more motivated to
maintain a connection with a child despite life circumstances
that may reduce disclosure inhibition. Alternatively, disclosure
could be more logistically related. Sons may experience
increased access to mothers versus other family members. For
example, it is possible that in divorced families, adult sons
make more attempts to maintain a relationship with mothers than
fathers. Each of these postulates are worthy of further
Results from this research reveal that
within 1 month of diagnosis, 42% of mothers, 31% of fathers, 33%
sisters, and 26% of brothers received information about a family
member’s HIV status (Table 2). After 2 years, 60% of mothers,
43% of fathers, 47% of sisters, and 50% of brothers were told by
the infected family member. These rates appeared to level off
substantially after 10 years. Given the relative stability of
these rates, beyond 15 years, it is expected that little change
would occur. It is important to note that overall, disclosure of
HIV status to family members over time was rather low, and if
members were not disclosed to in the first 2 years the chances
of disclosure occurring decreases rapidly. In fact, only 80% of
mothers, 62% of fathers, 73% of sisters, and 62% of brothers
were told over a 15 year period, and perhaps a lifetime (Table
2). It should be noted that these results could be overestimated
based on missing data about family members. For example, of the
135 participants in the study, data on only 100 fathers were
available and of these only 68 had been told by the participant.
It was unclear in this study if fathers were generally absent
from participants lives and not available for disclosure or
deceased prior to diagnosis.
The models presented in Table 2 allow for
the examination of the influence of family role, disease
progression, family characteristics, participant characteristics
and a combined model. When drawing conclusion about the models,
it is important to look at both significant and nonsignificant
results. Model 1 indicated that mothers had a 100% and brothers
had a 64% greater rate of being disclosed to in comparison to
fathers. In model 2, the variables length of diagnosis and pre-HAART
or post-HAART were added producing some interesting results.
Previous researchers have indicated that
disease progression (i.e., length of diagnosis) was a
significant factor associated with disclosure to family members.4,5
However, in the disease model 2, neither length of diagnosis or
pre-HAART or post-HAART significantly altered the rate of
disclosure to family members but these results further call into
question the explanatory power of the disease progression
theory. HIV/AIDS treatment advances, in particular that of HAART,
may not play a significant role in decisions regarding
disclosure. Therefore, while HAART has made a drastic shift in
the HIV treatment regimen as well as significantly altering the
health of those with HIV, its influence on disclosure is
questionable. While admittedly the disease variables are
collinear, this did not impact the results in model 2. When
assessed individually, the results remain the same. It is
unknown, however, what decisions regarding disclosure are made
at the end of life. It is plausible that men could refrain from
disclosing their HIV status even upon death. It is equally
plausible that men disclose their status when faced with end of
life decisions and therefore family members may become aware
just prior to death. This phenomenon is worthy of further
Family characteristics were then added in
model 3 and significant differences in rates of disclosure to
parents diminished but crossgenerational differences emerged.
Age and satisfaction with family member were, however,
significant. That is, being 1 year older was associated with a
lesser risk of disclosure by 4%. Interestingly, while this is
suggestive that relationship satisfaction may play a role in
disclosure, in this study, such differences did not emerge.
Results indicated that as current satisfaction with the family
member decreases by one point, the hazard rate increases by 2%.
In other words, contrary to what we might assume, as
satisfaction decreases the rate of disclosure increases. One
point of consideration is the time at which satisfaction was
measured. Satisfaction with the relationship was measured at the
time the family member was mentioned during the interview and
not at the time of disclosure. Therefore, it is plausible that
disclosure may have caused additional stress to the relationship
causing a decrease in relationship satisfaction over time.
Future researchers utilizing prospective designs might be able
to better test this notion.
As the results in model 4 indicated, when
participant characteristics are added, differences between
family disclosure rates weaken and age of the participant and
prior disclosure are significant. These results suggest that
participants with prior disclosures to family members had an 85%
less risk of disclosure to other family members. That is, if a
participant had told one or more family members within the span
of 1 month, the risk of disclosure to other family members was
lessened. There are several plausible reasons for this finding.
First, having told one or more family members means that there
are fewer possible family members to disclose to. Second, some
participants tell immediate family members at or around the same
time. Because of the retrospective nature of this study,
disclosure was recorded in a 1-month time frame. So even if a
participant recalled telling his mother first, if he told the
other family members within that same month they would all be
calculated from the same month. Third, it is also possible that
a negative reaction from the first family member told, prompted
the participant to delay future disclosures to other family
In the combined model, model 5, prior
disclosure remained the only statistically significant variable
along with differences between disclosure rates to brothers and
sisters. It should be noted that the hazard ratios for age of
family members between models 3 and 5 and age of participant
between model 4 and 5 do not substantially change. This suggests
that although characteristics of the family member and
participant play a role individually in influencing disclosure
rates, they become statistically nonsignificant when analyzed
together along with prior disclosure. In addition, the combined
model suggests that future research should focus on the
variables that remained significant, that is, disclosure rates
to brothers and sisters, and the impact of prior disclosure.
What we did not investigate here, that may
be relevant, is the impact of circumstances such as physical
proximity such as coresidency or degree of contact with family.
It is possible that for men who live great distances from their
families, the need or desire to disclose their HIV status is
curtailed. Furthermore, it is not known to what extent, if any,
coresidence may have played a role in prompting disclosure. It
is also plausible that a decision is made soon after diagnosis
of who will be told and who will not be told. While it may take
2 years for the disclosure to occur, the decision may be made
early on and remain stable. Why this occurs remains elusive and
future researchers might consider examining such factors that
might affect this decision. Other possible consequences to be
weighed include estrangement, prior rejections from previously
difficult disclosures of a different nature (e.g.,
homosexuality, drug use), restricted family communication
patterns, or desires to protect family members or reduce their
Past research has not clearly differentiated between family
members who know and those who were told. Thus, much of the past
disclosure work appears to assume those who were infected did
the disclosing and this may not be true. For this study we
sought clarity about disclosure by identifying family members
who were “told” (i.e., first-hand disclosure) and those who
“knew” (i.e., second-hand disclosure). For this study,
second-hand disclosure included those told by someone other than
the participant (e.g., mother telling father or sibling, gossip)
and by accident (e.g., overhearing phone call, seeing
medication). Of the 597 family members, approximately 28% had
been told by someone else. To this end, family members were
excluded from the analyses if they had been informed of the
participant’s serostatus by a means other than the participant.
However, it should be noted that second-hand disclosure could be
viewed as a “competing risk” in survival analysis. Therefore,
right-censoring of this data would have been appropriate.
However, data on second-hand disclosures were not collected
because it was deemed highly unlikely that participants would
know the dates in which one person disclosed their HIV status to
another person. Depending on the timing of second-hand
disclosure, the cumulative disclosure curves may increase,
decrease, or stay the same. It is important that future
researchers consider the role of second-hand disclosure and seek
to obtain this information in prospective studies. How family
members communicate amongst themselves about highly sensitive
matters may serve an important coping function, especially
because it was not clear if the participant wanted those to know
or not. It may be important to determine if the participant was
amenable or even suggested that another member tell everyone so
they did not have to, or if they only wanted their mother to
know with no immediate intentions of telling other family
This investigation is the first to examine rates and patterns of
HIV disclosure among men who have sex with men to immediate
family members. Although retrospective in nature, these results
have provided some insights into risks for disclosure and raised
some interesting questions. Results indicated that mothers
remain the family member to be told in greatest proportion, and
that the proportion of family members told changes over time in
a different manner than presented in previous research.
Interestingly, the rate at which family members were told at all
time points generally does not significantly differ from each
other when accounting for characteristics of participants and
family members. Trends in the models indicated that mothers and
brothers had the greatest risk of disclosure and this remains
the same when the disease variables (length of diagnosis and
pre-HAART or post-HAART) were added. Family characteristics (age
and satisfaction) and participant characteristics (age and prior
disclosure) significantly changed the risk of disclosure among
family members. When combined only prior disclosure remained
significant. Therefore, while the disease progression theory of
disclosure still predominates in the literature, results of this
study suggest careful consideration should be given to factors
associated with family role and characteristics of both family
member and HIV-positive family member
This work was funded by a grant from the National institutes of
Mental Health (R29 MH56292) and supported by a grant from the
National Institute of Allergy and Infectious Diseases, Adult
AIDS Clinical Trials Group Grant AI259254. The authors thank the
men who participated in the study, Gary Phillips, Center for
Biostatistics at The Ohio State University, for his statistical
Serovich JM. Appropriateness of disclosure of HIV-testing
information: The perspective of PLWA’s.
J Applied Commun Res.
Marks G, Simoni JM, Ruiz MS, Richarson JL. Culturally sanctioned
secrets? Latino men’s nondisclousre of HIV infection to family,
friends, and lovers.
Health Psychol. 1995;14:6–12.
McKusick L, Pollack L. Disclosing HIV seropositivity to
Bundek NI, Richardson JL, Ruiz MS, Maldonado N, Mason HRC.
Self-disclosure of HIV infection: Preliminary results from a
sample of Hispanic men.
Marks G, Simoni JM. Self-disclosure of HIV infection among men
who vary in time since seropositive diagnosis and symptomatic
Catania JA, McKusick L, Coates TJ. Help-seeking for AIDS-related
concerns: A comparison of gay men with various HIV diagnoses.
Am J Community Psychol.
Turner H, Coates TJ. Social support, AIDS-related symptoms, and
depression among gay men.
J Consult Clin Psychol.
Uphold CR, Wu S, Reid K, Findley K, Duncan PW. Health-related
quality of life among men with HIV infection: Effects of social
support, coping, and depression.
AIDS Patient Care STDs.
SC, DiMarco M, Austin J, Luke W, Di-Fonzo K. Stress, social
support, and HIV-status disclosure to family and friends among
HIV-positive men and women.
J Behav Med.
Chauncey S, Tobey LA. The social support networks of gay men
with AIDS. J Commun
Exploring direction of causation between social support and
clinical outcome for HIV-positive adults in the context of
highly active anti-retroviral therapy.
Renwick R, McColl M. Coping and social support as determinants
of quality of life in HIV/AIDS.
Magee RH, Chauncey S. Identifying helpful and unhelpful
behaviors of loved ones: The PWA’s perspective.
Stall R, Smith K. Reliance by gay men and intravenous drug users
on friends and family for AIDS-related care.
Dunkel-Schetter C, Kemeny M. The multidimensional nature of
received social support in gay men at risk of HIV infection and
AIDS. Am J Community
Serovich JM. The role of family and friend social support in
reducing risk behaviors among HIV-positive gay men.
AIDS Educ Prev.
Ostrow DG, Joseph JG. Predictors of sexual behavior change among
men requesting their HIV-1 antibody status: The Chicago MACS/CCS
cohort of homosexual/bisexual men, 1985–1986.
AIDS Educ Prev.
Kelly JA, Somlai AM. Predictors of continued high-risk sexual
behaviors in a community sample of persons living with HIV/AIDS.
Richardson JL, Ruiz MS, Maldonado N. HIV-infected men’s
practices in notifying past sexual partners of infection risk.
Public Health Rep.
Involving family and significant others in acute care. In
Aronstein DM, Thomspon BJ, eds. HIV and Social Work: A
Practitioner’s Guide. Binghamton, NY: Haworth Press,
SE. Understanding AIDS: A Guide for Mental Health Professionals.
Washington, D.C.: American Psychological Association, 1995.
Court P, Vedhara K, Nott KH, Holmes J, Snow MH. The role of
disclosure in coping with HIV infection.
Chambre SM. HIV/AIDS as a chronic disease: Emergence from the
plague model. Am Behav
CJ. Human immunodeficiency virus (HIV) disease: Shifting focus
toward the chronic, long-term illness paradigm for
J Voc Rehab.
Revisiting how the chronic illness trajectory framework can be
applied for persons living with HIV/AIDS.
Sch Inq for Nurs Prac.
Adherence to HAART regimens.
AIDS Patient Care STDs.
PA. HIV therapy in 2003: Consensus and controversy.
A, van de Wiel MA, Ghani AC, et al. Mortality and progression to
AIDS after starting highly active antiretroviral therapy.
A test of two HIV disclosure theories.
AIDS Educ Prev.
Lovejoy D, Winstead BA. Personal accounts of disclosing and
concealing HIV-positive test results: Weighing the benefits and
risks. In: Derlega V, Barbee A, eds., HIV Infection and Social
Interaction. Thousand Oaks, CA: Sage, 1998:147–164.
Metts S, Petronio S, Margulis ST. Self-Disclosure. Thousand
Oaks, CA: Sage, 1993.
Moulton JM, Moss AR. Self-disclosure of HIV-1 antibody test
results: The San Francisco General Hospital Cohort.
AIDS Educ Prev.
Simoni JM, Marks G, Johnson CJ, Richardson JL. Missed
opportunities? Disclosure of HIV infection and support seeking
among HIV+ African-Americans and European-Americans.
Jr. Social support in the adjustment of pregnant adolescents:
Assessment issues. In Gottlieb BH, ed. Social Networks and
Social Support. Sage 1981;69–96.
STATA Statistical Software: Release 8.0. College Station, TX:
Stata Corporation 2003.
Leask C, Elford J, Bor R, Miller R, Johnson M. Selective
disclosure: A pilot investigation into changes in family
relationships since HIV diagnosis.