Article

Self-disclosure of HIV diagnosis to sexual partners by heterosexual and bisexual men: a challenge for HIV/AIDS care and prevention

Instituto de Psicologia, Universidade de São Paulo, Brasil.
Cadernos de saúde pública / Ministério da Saúde, Fundação Oswaldo Cruz, Escola Nacional de Saúde Pública (Impact Factor: 0.98). 09/2011; 27(9):1699-710. DOI: 10.1590/S0102-311X2011000900004
Source: PubMed
ABSTRACT
This study investigated the disclosure of HIV-positive serostatus to sexual partners by heterosexual and bisexual men, selected in centers for HIV/AIDS care. In 250 interviews, we investigated disclosure of serostatus to partners, correlating disclosure to characteristics of relationships. The focus group further explored barriers to maintenance/establishment of partnerships and their association with disclosure and condom use. Fear of rejection led to isolation and distress, thus hindering disclosure to current and new partners. Disclosure requires trust and was more frequent to steady partners, to partners who were HIV-positive themselves, to female partners, and by heterosexuals, occurring less frequently with commercial sex workers. Most interviewees reported consistent condom use. Unprotected sex was more frequent with seropositive partners. Suggestions to enhance comprehensive care for HIV-positive men included stigma management, group activities, and human rights-based approaches involving professional education in care for sexual health, disclosure, and care of "persons living with HIV".

Full-text

Available from: Vera S.F. Paiva, Jun 27, 2014
Cad. Saúde Pública, Rio de Janeiro, 27(9):1699-1710, set, 2011
1699
Self-disclosure of HIV diagnosis to sexual
partners by heterosexual and bisexual
men: a challenge for HIV/AIDS
care and prevention
A revelação da soropositividade por homens
bissexuais e heterossexuais para parceiros
sexuais: um desafi o para o cuidado
e a prevenção do HIV/AIDS
1
Instituto de Psicologia,
Universidade de São Paulo,
São Paulo, Brasil.
2
Faculdade de Medicina,
Universidade de São Paulo,
São Paulo, Brasil.
3
Programa de DST/AIDS,
Secretaria de Saúde de São
Paulo, São Paulo, Brasil.
Correspondence
V. Paiva
Instituto de Psicologia,
Universidade de São Paulo.
Av. Prof. Mello Moraes 1721,
São Paulo, SP 05508-900,
Brasil.
veroca@usp.br
Vera Paiva
1
Aluisio C. Segurado
2
Elvira Maria Ventura Filipe
3
Abstract
This study investigated the disclosure of HIV-
positive serostatus to sexual partners by hetero-
sexual and bisexual men, selected in centers for
HIV/AIDS care. In 250 interviews, we investigated
disclosure of serostatus to partners, correlating
disclosure to characteristics of relationships. The
focus group further explored barriers to mainte-
nance/establishment of partnerships and their
association with disclosure and condom use.
Fear of rejection led to isolation and distress,
thus hindering disclosure to current and new
partners. Disclosure requires trust and was more
frequent to steady partners, to partners who were
HIV-positive themselves, to female partners, and
by heterosexuals, occurring less frequently with
commercial sex workers. Most interviewees re-
ported consistent condom use. Unprotected sex
was more frequent with seropositive partners.
Suggestions to enhance comprehensive care for
HIV-positive men included stigma manage-
ment, group activities, and human rights-based
approaches involving professional education
in care for sexual health, disclosure, and care of
“persons living with HIV.
Sexuality; HIV; Acquired Immunodeficiency Syn-
drome
Introduction
Disclosure of HIV-positive serostatus has been
defined as a process of communicating poten-
tially stigmatizing information that had previ-
ously been kept hidden in order to increase
ones psychological well-being, and in the case
of disclosure to sexual partners, to preserve the
quality of relationships. Disclosure is thus not a
simple act. It involves careful consideration of “to
whom” and “when” and depends on preparation
and a personal decision.
When people discover they are HIV-infected,
many isolate themselves due to fear of rejection
and abandonment, when they think of disclosing
their serostatus
1,2,3,4
. Studies on the issue with
samples of persons living with HIV in countries
of the Americas, Europe, and Asia with access to
treatment have indicated that disclosing ones
HIV diagnosis decreases stress and isolation, ex-
pands social support, and favors adaptation to
medication intake and negotiation of safer sex in
various inter-subjective contexts, with an impact
on controlling the spread of the epidemic. Mean-
while, the combined stigmas associated with HIV
(homophobia, sexism, and racism) increase the
difficulties in self-disclosure
5,6
. Persons also tend
to disclose their status more readily with steady
and regular sexual partners, in the context of
longer-lasting and marital relations, than to per-
sons with whom they have casual encounters; for
ARTIGO ARTICLE
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people living with HIV, having sex without dis-
closing ones diagnosis to partners is common
7
.
As described by Klitzman & Bayer
8
in a
study aimed at understanding the dynamics of
disclosure of HIV diagnosis to partners, family
members, friends, and coworkers in New York
City, various codes for indirectly communicating
ones positive serostatus are used, such as leav-
ing medication in plain view in the living room
and educating partners on the need for people
in general to protect themselves with condoms;
such strategies are more common among ho-
mosexual men, among whom HIV prevalence is
often high. In their study, those that adopted this
way of disclosing their diagnosis felt that veiled
messages met the moral imperative of commu-
nicating seropositive status; others considered
such approaches morally unacceptable, a half-lie.
In contexts of anonymous or casual sex (hetero-
sexual or homosexual), silencing on seropositive
status was viewed as more acceptable; speaking
about infection in these situations was perceived
as anti-erotic. On the other hand, more lasting re-
lationships assume or require trust in order to be
establish, and non-disclosure could perpetuate
mistrust; meanwhile, disclosure to one partner
could help build the confidence what would tend
to stimulate disclosure to others.
The few Brazilian studies on this theme that
include men discuss disclosure of the diagnosis
to” persons with HIV, rarely “by” persons living
with HIV to significant others, even though they
recognize that this question has an important
impact on health and quality of life
9,10
.
This article describes the disclosure of HIV
diagnosis in the context of the affective and sex-
ual lives of heterosexual and bisexual men living
with HIV and discusses how health services could
contribute to this process.
Method
The study was conducted in two stages, accord-
ing to a design that has been presented elsewhere
6,11,12,13
. Briefly, in the first stage, a consecutive
sample of 250 men, patients followed at two re-
ferral centers for HIV/AIDS care in São Paulo,
Brazil, were invited to participate in a ques-
tionnaire-based interview containing open and
closed questions on socio-demographic data, in-
formation related to HIV infection, experiences
with discrimination and support, and reports on
their affective and sexual lives. The principal out-
come for this study was the patient’s report of
having disclosed his seropositive status to sexual
partners (men and women). The study included
patients in good health condition, 18 years old or
older, and who reported having sexual contact
with women.
Considering that experiences with disclosure
of seropositive status can occur differently in
distinct groups of men living with HIV, a disag-
gregated data analysis was conducted according
to self-reported skin color and sexual behavior.
As proposed in studies on the impact of racism
in healthcare in Brazil
14
, for the skin color”
variable, “blacks” were defined as the sum of
self-identified “blacksand “browns, and “non-
blacks” were defined as the sum of whites, Asian-
descendents, and indigenous. Based on reported
sexual practices, bisexual was defined as a man
who reported having had sexual relations with
another man anytime in his life, besides sexual
relations with women.
In addition, we aimed at characterizing the
sexual life of the men included in the study, on
the assumption that disclosure of seropositive
status could be associated with variables related
to their sexual partnerships. We thus asked inter-
viewees to list the persons with whom they had
had sexual relations in the six months prior to
the interview. Next, for each listed partner, the
interviewees specified: serostatus (HIV-positive,
HIV-negative, or unknown); whether the part-
ner (male or female) knew that the interviewee
was seropositive; whether he used condoms
with him/her (yes, no); whether they constitut-
ed steady partnerships” (girlfriend/boyfriend,
spouse, cohabiting), concurrent or not “regular
partners” (casual dates, lovers, affairs, friends
with whom they had sex), or de programa” (a
Brazilian category for casual sex exchanged for
money or favors). For purposes of analysis, we
defined main partner” as the partner (female or
male) listed first by the interviewee.
For comparison of the target variables (ex-
tracted from the answers to the questionnaire)
between the various groups (blacks, non-blacks;
homosexuals, bisexuals), we used the chi-square
test using SPSS 13.0 (SPSS Inc., Chicago, USA).
For the second stage of the study, we invited
all the interviewees who at the end of the inter-
view had shown interest in participating in group
activities. The objective of the first group session
was to present the interviewees with the prelimi-
nary analysis of the interviews from the first stage
and to discuss it with the participants, as well as
to raise themes for four additional sessions re-
lated to living with HIV/AIDS. The four discus-
sions were conducted with the interviewees in
one of the two HIV/AIDS services. The chosen
themes included: (1) the desire to have children,
and the possibility of doing so; (2) difficulties in
getting and keeping a job; (3) prejudice; (4) dif-
ficulties in affective and sexual relations or in
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starting a new relationship, a theme focused on
this current study. The number of participants
in the four sessions organized in a focus group
format varied from 14 to 18 men. All the meet-
ings were coordinated by a psychologist, assisted
by two members of the research team, and lasted
approximately two hours each, were taped and
transcribed.
In this article we analyze the recordings of the
4
th
session group, in which the issue of disclosure
of HIV diagnosis emerged, and in which 14 men
participated. The analysis sought to explore lines
of meaning, practical significance, values and
feelings related to disclosure of the diagnosis to
sexual partners. The interviewees’ responses to
the open questions on their affective-sexual life
after disclosing their seropositive status were also
analyzed, after the responses to the open ques-
tions were categorized by two evaluators
15
.
The study design and informed consent pro-
cess guaranteed confidentiality in data process-
ing and were approved by the Institutional Re-
view Boards of the two participating centers.
Results
A more in-depth understanding of adaption pro-
cess in the affective and sexual life as a person
living with HIV carriers is essential for contextu-
alizing the dilemmas involved in disclosing their
diagnosis to sexual partners. We found important
differences in this experience when comparing
bisexual and heterosexual men.
Study subjects’ characteristics
Table 1 shows the distribution of study sub-
jects by age, income, work situation, schooling,
marital status, number of children, and religion.
Among the interviewees, 58% identified them-
selves as white and 0.8% as either Asian-descen-
dant or indigenous (i.e., 58.8% were classified as
non-black”); 14% identified themselves as black
and 27% as brown (i.e., 41% were classified as
“black”). Ninety-five men (38%) stated having
had sexual relations with other men at some time
in their lives, and for purposes of analysis they
were considered bisexual. The mean time since
the last homosexual contact was 4 years (median
2 years). There was no difference in the propor-
tion of bisexuals between blacks and non-blacks.
As for the socio-demographic variables, the only
significant difference between blacks and non-
blacks was in schooling (p = 0.00).
The comparison between heterosexuals and
bisexuals showed differences. Proportionally
more bisexual men had reached the university
(p = 0.01), while proportionally more hetero-
sexual men were married and had children (p =
0.00). Among heterosexuals, there were likely to
be unemployed and fewer had formal jobs (with
signed work papers).
As for HIV infection, time since diagnosis var-
ied from 1 month to 17 years (mean 5.7 years),
and 92% of the interviewees reported taking an-
tiretrovirals. As discussed previously
11
, the most
common reason for having been tested for HIV
was having HIV-related symptoms (42%), and the
majority (55%) did not expect a positive HIV test
result. Sexual transmission was reported as the
most common route of infection, and 11% men-
tioned injecting drug use. An important propor-
tion of interviewees (16%) did not know they had
been tested when they received the result, a situ-
ation that was more frequent among heterosexu-
als (19.7%) as compared to bisexuals (9.7%).
As for the impact of the beginning of antiret-
roviral treatment, 16% reported an increase in
the frequency of situations involving discrimina-
tion or tension in hiding their status, fearing that
the number of medical consultations and con-
stantly medication intake would reveal their HIV-
positive status. A high proportion of interviewees
(88.5%) stated that they practiced some religion,
with Catholicism as the most common. The ma-
jority had children, and 13% of the children had
been born after the interviewees received their
HIV diagnosis, an issue discussed more deeply in
another article
12
.
Sexuality and its relationship to disclosure
of diagnosis
Table 2 summarizes the data for all the women
and men that were listed by the sexually active
interviewees as their sexual partners in the six
months prior to the interview and about whom
the interviewees provided data. These included
spouses and steady girlfriends/boyfriends (70%
had been partners for more than six months at
the time of the interview), as well as consecu-
tive or concurrent girlfriends/boyfriends and af-
fairs over the course of 6 months. Importantly,
the partners (men or women) that were paid for
sex – programa” – (32% of the sexual partners)
were the persons to whom the interviewees least
frequently disclosed their seropositive status, in
contrast to disclosure to spouses and boyfriends/
girlfriends (69% of the partners that knew). These
characteristics, discussed next, were well-repre-
sented in relations with the persons chosen as
the “main partner”.
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Table 1
Socio-demographic profi le of black and non-black and bisexual and heterosexual interviewees.
Characteristics Non-black
(N = 147)
Black
(N = 103)
Heterosexual
(N = 155)
Bisexual
(N = 95)
n (%) n (%) n (%) n (%)
Age (years)
24 4 (2.7) 5 (4.9) 4 (2.6) 5 (5.3)
25-34 43 (29.3) 27 (26.2) 43 (27.7) 27 (28.4)
35-45 57 (38.8) 41 (39.8) 62 (40.0) 36 (37.9)
45-74 43 (29.3) 30 (29.1) 46 (29.7) 27 (28.4)
Schooling *
None 3 (2.0) 4 (3.9) 6 (3.9) 1 (1.1)
Incomplete primary 29 (19.7) 42 (40.8) 50 (32.3) 21 (22.1)
Complete primary/secondary 71 (48.3) 45 (43.7) 74 (47.7) 42 (44.2)
University (> 12 years of schooling) 44 (29.9) 12 (11.7) 25 (16.1) 31 (32.6)
Monthly income per household member (Reais) **
None 6 (4.2) 3 (3.1) 6 (4.0) 3 (3.3)
150.00 18 (12.6) 15 (15.5) 24 (16.1) 9 (9.9)
151.00-300.00 30 (21.0) 24 (24.7) 39 (26.2) 15 (16.5)
301.00-600.00 30 (21.0) 30 (30.9) 36 (24.2) (26.4)
> 601.00 59 (41.3) 25 (25.8) 44 (29.5) 40 (44.0)
Employment status
Employed 46 (31.7) 31 (30.1) 43 (27.9) 34 (36.2)
Self-employed 38 (26.2) 17 (16.5) 30 (19.5) 25 (26.6)
Odd jobs 8 (5.5) 11 (10.7) 16 (10.4) 3 (3.2)
Unemployed 19 (13.1) 17 (16.5) 27 (17.5) 9 (9.6)
Retired/On leave 24 (23.4) 27 (26.2) 38 (24.7) 23 (24.5)
Marital status ***
Single 65 (44.2) 47 (46.1) 48 (31.2) 64 (67.4)
Married/Cohabiting 62 (42.2) 39 (38.2) 76 (49.4) 25 (26.3)
Separated/Divorced 14 (9.5) 10 (9.8) 21 (13.6) 3 (3.2)
Widow(er) 6 (4.1) 6 (5.9) 9 (5.8) 3 (3.2)
Number of biological children ***
None 68 (46.3) 53 (51.5) 58 (37.4) 63 (66.3)
1 31 (21.1) 24 (23.3) 40 (25.8) 15 (15.8)
2 32 (21.8) 10 (9.7) 28 (18.1) 14 (14.7)
3 16 (10.9) 16 (15.5) 29 (18.7) 3 (3.2)
Religion
Catholic 79 (54.1) 45 (43.7) 79 (51.3) 45 (47.4)
Evangelical/Protestant 23 (15.8) 25 (24.3) 32 (20.8) 16 (16.8)
Spiritist 15 (10.3) 11 (10.7) 13 (8.4) 13 (13.7)
Buddhist/Jewish/Other 11 (7.5) 6 (5.8) 10 (6.5) 7 (7.4)
African Brazilian 1 (0.7) 4 (3.9) 1 (0.1) 4 (4.2)
None 17 (11.6) 12 (11.7) 19 (12.3) 10 (10.5)
Note: the total number is not always the same, due to missing answers for each variable.
* Signifi cance of the difference between non-blacks and blacks for schooling (p = 0.000); between heterosexuals and bisexuals
for schooling (p = 0.011);
** 1 monthly minimum wage = R$200.00;
*** Signifi cance of the difference between heterosexuals and bisexual for marital status (p = 0.000) and number of children
(p = 0.000).
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Disclosure and condom use with the
main partner
We found no differences between interviewees in
the disclosure of seropositive status to the main
partner when comparing different age groups,
schooling, religion, or blacks and non-blacks
(data not shown).
Comparing those that disclosed their serosta-
tus to the main partner versus those that did not
(Table 3), the proportion of interviewees that dis-
closed their diagnosis was higher in the case of
female partners or partners that were also HIV-
positive. There was also a significant difference
in the frequency of disclosure as a function of
the type of relationship with the partner (more
frequent with steady partners) and condom use
during anal sex.
Importantly, seven men failed to disclose their
HIV-positive status and were not using condoms:
two men who had unprotected vaginal sex with
steady [female] partners”, two with regulars
(lovers), and one with a “programa” (in this case
a female sex worker); two men exposed female
sex workers to infection by having anal sex with
them without condoms. Meanwhile, the propor-
tion of safer sex with the main partner was quite
high, both for vaginal sex (83.1% always used
condoms) and anal sex (42% always used con-
doms and 45% did not have anal sex).
Difficulties in disclosing the diagnosis to
male and female partners and condom use were
explored in the open questions, the source of the
quotes below. Twenty male interviewees reported
varying degrees of difficulty in starting a new re-
lationship because of the need to reveal their HIV
status.
I feel better telling the truth. Last week I met
a woman, and when I was putting the condom on
she asked why. I explained everything and she ac-
cepted me” (Participant U).
Corroborating observations by Klitzman &
Bayer
8
, most of our interviewees adopted the
moral imperative of revealing their diagnosis, on
grounds that it was “unethical to deceive, words
that were frequently repeated in the interviews.
Meanwhile, some preferred to strengthen the
emotional link first and reveal ones diagnosis
later.
I would only tell [about my diagnosis] if the
relationship became serious, but I wouldnt put
her life in jeopardy” (Participant W).
One interviewee had a girlfriend when he
received his HIV diagnosis. He left her without
giving her any explanation after discovering that
she was HIV-negative. Many of the study subjects
acknowledge prejudice in their own experience,
associating it with “ignorance.
When you don’t know, everything’s beautiful.
Later things change, there’s the barrier... of con-
tamination... lack of dialogue... secrets... fear. I was
prejudiced myself. Even if she were the most beau-
tiful women in the world, I’d split” (Participant V).
One of the 72 men among those that did not
feel bound to disclose his diagnosis to sex work-
ers thought it was very difficult to talk about the
issue and also did not trust in persons living with
HIV.
Table 2
Distribution of women and men listed as sexual partners in the 6 months prior to the interview according to relationship,
serostatus, and disclosure of serostatus by the interviewee.
Relationship Women Men
Spouse/
Steady
girlfriend
Affair/
Date
"Programa"
(paid sex)
Total Spouse/
Steady
boyfriend
Affair/
Date
Trick Total
Partner’s serostatus
HIV+ 37 13 12 62 13 4 3 20
HIV- 88 27 16 131 8 11 4 23
Doesn’t know 11 31 59 101 2 16 30 48
Total (%) 136 (46.3) 71 (24.1) 87 (29.6) 294 (100.0) 23 (25.3) 31 (34.0) 37 (40.7) 91 (100.0)
Did he or she know?
Yes 117 31 13 161 20 9 9 38
No 11 36 72 119 2 21 28 51
Total (%) 128 (45.7) 67 (23.9) 85 (30.4) 280 (100.0) 22 (24.7) 30 (33.7) 37 (41.6) 89 (100.0)
Note: the total number is not always the same, due to missing answers for each variable.
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HIV-positive people dont have lasting rela-
tionships. The person gets uptight and cant stick
to one partner, and ends up playing around” (Par-
ticipant X).
In contexts marked by stigma and prejudice,
failing to reveal ones diagnosis and only incorpo-
rating condom use does not always solve the dif-
ficulty, frequently raises suspicion of something
unacceptable, and triggers stigma rather than the
partner’s complicity in prevention: If you men-
tion condoms, [the other person reacts],‘Whats
up, do you think I’m sick?’” (Participant Y).
Disclosure, as Table 3 shows, tends to be more
common to HIV-positive male and female part-
ners (98% of the interviewees revealed their diag-
nosis to HIV-positive main partners as compared
Table 3
Disclosure of diagnosis according to relationship (men and women), serological status of the main partner, and condom use.
Characteristics Disclosed Did not disclose Total
n%n%N%
Women *
Steady 105 92.9 8 7.1 113 100.0
Regular 11 44.0 14 56.0 25 100.0
Date 2 10.0 18 90.0 20 100.0
Sub-total 118 74.7 40 25.3 158 100.0
Men *
Steady 15 88.2 2 11.8 17 100.0
Regular 5 33.3 10 66.7 15 100.0
Date 2 33.3 4 66.7 6 100.0
Sub-total 22 57.9 16 42.1 38 100.0
Partner's serostatus
HIV+ 51 98.1 1 1.9 52 100.0
HIV- 76 79.2 20 20.8 96 100.0
Doesn’t know 13 27.1 35 72.9 48 100.0
Sub-total 140 71. 4 56 28.6 196 100.0
Condom use
Vaginal sex
Always 94 73.4 34 26.6 128 100.0
Sometimes 13 86.7 2 13.3 15 100.0
Never 8 72.7 3 27.3 11 100.0
Sub-total 115 74.7 39 25.3 154 100.0
Anal sex **
Always 50 61.7 31 38.3 81 100.0
Sometimes 5 83.3 1 16.7 6 100.0
Never 17 94.4 1 5.6 18 100.0
Doesn’t apply 66 75.9 21 24.1 87 100.0
Sub-total 138 71.9 54 28.1 192 100.0
Note: the total number is not always the same, due to missing answers for each variable.
* Differences p < 0.00;
** Differences p = 0.02.
to 79% of HIV-negative partners), a tendency that
can be understood based on the fear of prejudice
and rejection expressed in the responses by the
vast majority of those that elaborated on the an-
swers in the open question on this issue.
A lot of people are ignorant, they lack infor-
mation, they’re afraid because it involves preju-
dice. I have a new [female] partner now. But she
had to give up her family. My own mother took it
on herself to tell...” (Participant Z).
Discussion disclosure to sexual partners in a
group session
Difficulties with disclosure to sexual partners
were discussed in focus group session 4, which
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included 14 men (married and single, bisexual
and heterosexual, of various ages, religions, edu-
cational levels, blacks and non-blacks, and em-
ployed, unemployed, and retired).
The need to “trust in order to reveal ones di-
agnosis, with fear of abandonment and rejection,
appeared constantly in the debate. We quote sev-
eral passages below to illustrate the wealth of this
group session experience, positively assessed by
participants (the letters refer to different partici-
pants).
It’s happened with me twice, when I told, the
person didn’t want to go out with me anymore.
Some people think you’re promiscuous just be-
cause you’re HIV-positive. Thats prejudice, and I
don’t even go out anymore, to avoid getting hurt
(Participant A).
Some people think that if you’re HIV-positive
you can’t have sex” (Participant B).
I’m still doing fine sexually. I dont have any
problems even with HIV, or with taking my meds.
For me, it only gets tough if I get [emotionally] in-
volved, because if I’m in love, then I’m going to have
to tell. That’s when the fear of rejection comes in,
when you realize you’re in love, and you think, ‘I’m
going to be rejected because of it!’” (Participant C).
Disrespect for the right to an active sexual
and reproductive life is part of the social scenario
marking the lives of persons living with HIV
12
,
but experiences in talking about this issue with
health professionals in specialized services were
quite rare according to participants. In the group
discussion setting, they shared various ways of
coping with their difficulties in this area, already
reported by many interviewees.
I was going out with a person, and the time
came when she wanted to have sex without a con-
dom. I said no. She asked why. I said I wanted pre-
vention from sexually transmissible diseases. She
said she didn’t have anything. I asked, Are you sure
I am not?’ I broke off the relationship. I didnt want
to tell [disclose]” (Participant A).
To avoid the problem of whether to tell, some
people date through the classified ads. ‘Carriers
looking for carriers. The problem is that people
don’t fall in love through the classifieds. It’s dif-
ficult to tell the person. I’ve had relations where
I told, and it was cool, but there was one person
I was very involved with, and the day I was going
to tell I was trembling. She was also very involved,
but she didn’t know how to deal with it. So I felt
bad, and I ended up dropping out of the relation-
ship” (Participant B).
I’m in a relationship, my woman has HIV,
and I don’t use condoms. It’s like eating candy in
the wrapper” (Participant C).
My wife is not HIV-positive. At first she was
afraid that I’d transmit [the virus] to her. Later
we went to the doctor together, to talk. The doc-
tor talked to her and explained things. So lately
I haven’t been having sex with her. She was get-
ting really uptight, wanting me to get [the sex]
over with quickly, for fear that the condom would
burst” (Participant B).
My problem is basically like his. I’ve been
married for 30 years, and it used to be normal, but
then it began, when we were going to have sex, and
I always saw that fear in her, it wasn’t something
that we wanted spontaneously, it caused fear, and
we drifted farther and farther apart. We’re still to-
gether, but we don’t do anything anymore. So I’m
forced to play around. And then I use condoms. It’s
bad, I dont like it. But better with condoms than
nothing” (Participant E).
For me, it’s not over yet. It’s in the cooling-off
phase, but without letting it cool off, right? Shes
HIV-positive. But I think this cooling-off phase of
ours in the last two years was due more to hav-
ing a new baby. He’s almost three years old now
(Participant F).
This condom business, in the beginning it
made me mad, I didnt want anything to do with
condoms. I took a dim view of condoms. The doc-
tor explained that [unprotected sex] increased the
amount of virus, the viral resistance, and that you
could catch a virus that would knock you out once
and for all, no way around it. And I began to use
them, but I didnt know how. And the doctor ex-
plained how to do it. She said, The first thing you
need to do to use condoms normally is to practice
alone. You put the condom on and masturbate,
and after youve done that two or three times,
you’re already using the condom okay, and it’s not
going to get in the way anymore. So you get used
to it, after three times, you’re ready. And it really
is protection, not just for the person that’s having
sex with you, but for you as well. There are some
diseases that don’t give you a break, like hepatitis
C which is a goodbye call – if you catch it, it’s all
over” (Participant G).
In my case, I didn’t even try [to use a female
condom with my wife], because I’ve known the
woman for 30 years. Shes a tough character, you
know?” (Participant E).
This condom business varies, right? In the
beginning it’s difficult, it bothers you and all.
But when you begin to practice, the time comes
when it’s automatic. So my wife, my sons mother,
I brought her here [to the clinic], she did the tests,
and we were having sex with condoms. But you al-
ways think,Are you sure it didnt leak, what about
that game we were playing, and I dont know what
all...’ I never resisted using condoms, and we never
had any problem in bed or with not wanting [sex],
because we were both very conscientious. I even
brought female condoms, which we tried once, but
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Paiva V et al.
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Cad. Saúde Pública, Rio de Janeiro, 27(9):1699-1710, set, 2011
they’re very uncomfortable, so we preferred for me
to use the condom. I think it’s very important to
include the family [into the health service], the
person that’s in bed with you. Because for whoever
is on the outside, the word AIDS is really scary
(Participant B).
The other person also has to care for herself
or himself. Otherwise you go to bed with the other
person feeling like the ‘Hiroshima bomb, and it
doesn’t work” (Participant A).
Discussion
Answers to the questionnaire-based interview
and the above-mentioned debate among male
interviewees corroborated the literature that de-
scribes fear of the stigma and discrimination as-
sociated with HIV
as one of the principal factors
hindering disclosure of HIV-positive status to fu-
ture and current sexual partners. The results are
consistent with authors that propose expanding
care for persons living with HIV beyond manage-
ment of the infection itself to include compre-
hensive care that approaches their sexuality and
issues like disclosure.
Analogously to the observations by Klitzman
& Bayer
8
, we observed the need for individuals
to gain trust” in order to disclose their diag-
nosis, besides the search for relationships with
HIV-positive partners, which some of the inter-
viewees considered the only morally acceptable
sexual relationship. Non-disclosure of their HIV
diagnosis was also reported as more acceptable
in the case of anonymous or paid sex partners.
It is relevant that the vast majority of the in-
terviewees used condoms during sexual relations.
Meanwhile, many male and female partners, even
when they were HIV-negative and aware of the
partner’s diagnosis, accepted or even proposed
having sex without condoms, because love is
blind” as one bisexual man reported, or because
sometimes [the woman] seems silly, pretending
I don’t have [HIV]”. As observed in other studies
with men
16,17
, sexual activity in the context of
conjugality or a relationship involved different
practices as compared to those in the context of
relations with lovers or affairs (regular but not
conjugal partners), further differing from practic-
es with partners paid for programa” (exchanged
for money or favors), with repercussions on the
disclosure process. Again, one observes that un-
protected sex occurs more frequently with other
persons also living with HIV as compared to sex
with partners of unknown serostatus or whom
one knows to be HIV-negative
17,18
.
Moreover, as in other recent studies in the
United States
17
, many participants reported that
in addition to serosorting” (choosing persons
with the same serostatus), simply stopping sex-
ual relations with their spouses, or failing to seek
new partners, because they found it difficult to
cope with the moral imperative of revealing their
diagnosis or were not confident that they would
be capable of protecting their partners – inca-
pable of hiding what they considered a central
aspect of their identity, or of believing that con-
doms would protect their partners from infection
or both from re-infection.
These findings are consistent with the results
of studies in mixed samples (women and men,
heterosexual and bisexual) in the context of ac-
cess to treatment. As with our findings, disclo-
sure rates of HIV-positive status to partners as
described in the literature vary from 67% to 88%
5
and are higher in the case of longer-term and
HIV-positive partners; the rates also tend to be
lower in the case of casual partners
7,18
.
Bisexual and heterosexual sexuality
Due to space limitations, this article has focused
relatively little attention on several other ele-
ments in the interviewees’ sexual experience.
As far as we know, this was the first study to in-
clude bisexual men in the context of HIV infec-
tion, based on their relationship with women, a
widely discussed theme, but studied relatively
little since the second decade of the epidemic,
when the increase in HIV infection in women was
attributed to the “bisexual bridge
19
. Seffner
20
already noted that most of the studies on bisexu-
ality focused on relations with other men, i.e.,
almost never analyzing relations with women.
Future studies should analyze the bisexuality of
people living with HIV, including their relations
with women.
Various authors have discussed how the pro-
paganda about improvement in quality of life
with ARV treatment encourages the legitimiza-
tion of the norm known as dont ask, dont tell”
among HIV-positive homosexual men who as-
sume (without asking) that the others also carry
the virus, imagining that they have a low viral
load, controlled by the medication
21,22
.
The proportion of HIV-negative male part-
ners in our study was low (36.6% for the main
partner and 25% for all the partners) when com-
pared to a study in the United States
7
(58%) in
a homosexual and bisexual sample. Meanwhile,
the proportion of HIV-negative female partners
(44%) among heterosexual interviewees in our
study was similar to that found by the same au-
thors that also investigated partners of HIV-posi-
tive men under treatment during the six months
prior to the study.
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SELF-DISCLOSURE OF HIV-POSITIVE SEROSTATUS BY HETEROSEXUAL AND BISEXUAL MEN
1707
Cad. Saúde Pública, Rio de Janeiro, 27(9):1699-1710, set, 2011
Other studies on serodiscordant couples
23,24
have discussed how HIV-negative partners
feel “invisible, though they share the weight of
the stigmatizing illness and struggle to keep the
couples sexual activity alive. This experience
may explain the reported ambivalence of male
and female partners vis-à-vis their probable se-
roconversion, denying the risk and wanting to
share the seropositive status as proof of love and
trust, an experience observed among the men in
this study. In other words, disclosure alone does
not guarantee protected sex
17
, and this is one of
the reasons why many interviewees defended the
inclusion of family members and partners (male
and female) in the health services, a demand ob-
served among HIV-positive women interviewed
in a previous study
23
.
Implications for care of men living with HIV
The primary aim of this study was to describe the
context in which self-disclosure of HIV-positive
diagnosis has occurred and the barriers faced by
male interviewees with their male and female
sexual partners, thereby helping improve qual-
ity of care for their affective/sexual lives, which
directly impacts the lives of their family mem-
bers and partners. In this sense, we contend that
encouraging users of health services to describe
and debate their needs for psychosocial care, as
we did, does foster understanding by health pro-
fessionals and thus promotes equity and com-
prehensiveness in the services, which are basic
principles of Brazilian Unified National Health
System (SUS).
Although we found no differences between
blacks and non-blacks, in contrast to a recent
study in the United States
25
, a theme that merits
another article, we found significant differences
between heterosexual and homosexuals. Support
for persons living with HIV to plan processes of
disclosure” to their partners should consider dif-
ferences in inter-subjective contexts.
When holding the discussion groups in the
group sessions follow up study with the inter-
viewees, we confirmed the impression that het-
erosexual men feel less at ease with (or actually
distrust) spaces for support, with which many
of them did not feel comfortable with because
they considered them a “homosexual space.
However, we observed that these men benefit-
ed from sharing their personal experiences in
group situations, just as much as women, who
are included more often in this kind of initiative
23,26
. In the more in-depth reports in response
to the open questions on their experiences with
health services, approached dynamically in the
group discussions, we confirmed the impor-
tance of welcoming questions on sexuality and
condom use and the usefulness of a professional
approach that takes the protection of rights into
account. Equally productive is comprehensive
health promotion that protects the right to build
a family and the right to sexuality and life in the
community without discrimination, that is, a
health service not limited to the management
of HIV infection. Sharing experiences with other
men in the same condition, as we observed, can
also facilitate the progressive structuring of dis-
closure of seropositive status when and to whom
they decide, a process that should allow better
care for others and themselves, whereby affec-
tive and sexual life is experienced with greater
tranquility.
Silva et al.
26
showed that professionals in SUS
recognize that experience with group discussion
expands the exclusive discussion of the condi-
tion as “virus carrier” to the context of daily life
(and conjugality), overcoming the victimization
discourse to force protagonists. In the setting
of the above-mentioned study, the health pro-
fessionals identified the central importance of
managing the stigma” associated with AIDS, a
theme that emerges in the interviews and group
discussions.
The notion of disclosure, common in stud-
ies of the experience with homosexuality and
with AIDS, reveals the process of stigmatization
and the context of violation of rights for persons
living with HIV
1,6,12
. The issue is a secret that
needs to be hidden, and the challenge is to re-
move the veil, “to disclose, and not simply “to
tell”, to talk about their condition with a viral in-
fection. As some authors working with preven-
tion have insisted
27
and analyses of the epidemic
have indicated
28,29
, the fight against stigma and
discrimination, protection of human rights, safe-
guards for autonomy, dignity, and physical and
mental well-being (and less stress) for persons
living with HIV will definitely stimulate the con-
trol of the spread of the epidemic.
Importantly, as in our study, in countries that
also have the privilege of access to treatment
and where disclosure of HIV-positive status is
not compulsory, persons that do not reveal their
diagnosis manage to talk about prevention and
incorporate consistent condom use, while per-
sons that disclose sometimes have sex without
condoms
5,17,24,30,31
. Meanwhile, we confirmed
that self-disclosure of HIV-positive status has
not necessarily been associated with consistent
condom use. In planning care for persons living
with HIV, it is important to note that avoiding
the stress resulting from non-disclosure, as other
authors have already indicated, produces other
obvious benefits
23,30,32,33
. For example, the social
Page 9
Paiva V et al.
1708
Cad. Saúde Pública, Rio de Janeiro, 27(9):1699-1710, set, 2011
support resulting from disclosure diminishes the
depression that follows diagnosis. In this sense,
we observed a greater tendency to disclosure and
higher adherence to condom use in men that dis-
cussed the issue at least once with health profes-
sionals and participated in support groups
5,17
.
Furthermore, the proportion of protected sex has
been positively associated with conversations on
safe sex with sexual partners, and not only with
disclosure
17,24,30,31
.
As we have discussed elsewhere, it is not up
to professionals to determine how people will
behave or what decisions they will make in their
affective, family, reproductive, or sexual lives, or
particularly in relation to disclosure of their se-
rostatus. It is up to the state
29
and health workers
to implement the principles of the SUS, and at
least to tackle the challenge of guaranteeing ev-
eryones right to sexual and reproductive health
with quality, in order for their decisions in daily
life to be made after being adequately informed
and their difficulties understood, rather than be-
ing reduced to “HIV carriers, but supported as
persons living with HIV”.
Resumo
Este estudo investigou a revelação da soropositividade
para parceiro/as sexuais por homens, hetero e bissexu-
ais, usuários de serviços especializados no cuidado ao
HIV/AIDS. Por meio de 250 entrevistas individuais e
grupo focal descrevemos a revelação segundo caracte-
rísticas das parcerias e discutimos as dificuldades para
manter ou estabelecer novas relações afetivo-sexuais e
com o sexo protegido. Observamos que o temor à re-
jeição provoca isolamento e sofrimento e dificultava a
revelação para parceira/os atuais ou futuro/as. Revelar
requer confiança e foi mais frequente para parceira/
os fixa/os, para soropositiva/os, para mulheres, e me-
nos frequente para parceiro/as pagos por “programa.
Heterossexuais revelavam mais. A maioria usava pre-
servativos consistentemente, embora menos frequen-
temente com parceiros soropositivos. Para melhorar o
cuidado integral de homens soropositivos, sugere-se a
“gestão do estigma, atividades em grupo e abordagens
baseadas em direitos humanos que capacitem profis-
sionais para o cuidado da vida sexual-afetiva, da reve-
lação e ao apoio ao viver com HIV.
Sexualidade; HIV; Síndrome de Imunodeficiência Ad-
quirida
Contributors
V. Paiva participated in the projects coordination, fiel-
dwork, analysis, and writing of the article. A. C. Segura-
do and E. M. V. Filipe collaborated in the elaboration of
the project, fieldwork coordination, data analysis, and
writing of the article.
Acknowledgments
The authors wish to acknowledge the initial support of
the University of California-San Francisco and Norman
Hearst for the academic and financial support for the
project and the CNPq for its support in the form of pro-
ductivity scholarships. The comments and direct parti-
cipation in data collection by colleagues from the Casa
da AIDS (HC-FMUSP), CRT-AIDS/SP, and NEPAIDS-
USP, as always, were important in the work process that
led to this article.
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SELF-DISCLOSURE OF HIV-POSITIVE SEROSTATUS BY HETEROSEXUAL AND BISEXUAL MEN
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Cad. Saúde Pública, Rio de Janeiro, 27(9):1699-1710, set, 2011
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Page 12
  • Source
    • "Nondisclosure of a positive sero-status was common among couples when either member went alone for testing [26, 27]. This is a drawback in the fight against HIV/AIDS especially when new infections are occurring in stable heterosexual rela- tionships [27]. Knowledge of partner's sero-status increased chances of being enrolled into HIV care and adoption of safe sex practices including condom use282930. "
    [Show abstract] [Hide abstract] ABSTRACT: Background Studies have shown that couple HIV counseling and testing (CHCT) increased rates of sero-status disclosure and adoption of safer sexual behaviors with better linkage to treatment and care. However, current evidence suggests that new HIV infections are occurring among heterosexual couples in stable relationships where the majority of the individuals are not aware of their partner’s serostatus. This study examined the predictors of CHCT uptake among married or cohabiting couples of Bukomero sub-county Kiboga district in Uganda. Methods This cross-sectional correlational study was conducted among 323 individuals who were either married or cohabiting, aged 18–49 years. Participants were enrolled from randomly selected households in Bukomero sub-county. Data were collected using an interviewer-administered questionnaire on socio-demographics, self-rating on awareness of CHCT benefits, couple discussion about HIV testing and CHCT practices. Couples were compared between those who had reported to have tested as a couple and those who had not. Binary logistic regression was performed to determine the adjusted odds ratio [aOR] and 95 % confidence intervals [CI] for CHCT uptake and the other independent variables. Results Of the participants 288 (89.2 %) reported to have ever taken an HIV test only 99 (34.4 %) did so as a couple. The predictors of testing for HIV as a couple were discussing CHCT with the partner (adjusted odds ratio 4.95[aOR], 95 % confidence interval [CI]:1.99–12.98; p < 0.001), awareness of CHCT benefits (aOR 3.23; 95 % CI 1.78–5.87; p < 0.001) and having time to test as a couple (aOR 2.61; 95 % CI 1.22–5.61; p <0.05). Conclusion Uptake of HIV counseling and testing among couples was low. Discussing CHCT with partner, awareness of CHCT benefits, and availability of time to test as a couple were predictive of CHCT uptake. Thus CHCT campaigns should emphasize communication and discussion of HIV counseling and testing among partners.
    Full-text · Article · Dec 2015 · BMC Public Health
  • Source
    • "Similarly, qualitative research conducted among women report that although they are aware of the benefits of disclosing their status to sexual partners, the fear of abandonment, violence and being blamed for bringing HIV to the family prevent them from sharing their status with their partners49505152. These findings are consistent for adult males and adolescents who do not disclose their HIV serostatus to sexual partners in fear of being stigmatized [48,53545556. Given the potential benefits of HIV serostatus disclosure to sexual partners and the challenges PLWH face when deciding how, and when to disclose to sexual partners, it is clear that there is an ongoing need to support PLWH with the process. "
    [Show abstract] [Hide abstract] ABSTRACT: Disclosure of HIV serostatus to sexual partners is mandated within certain states in the United States and other countries. Despite these laws implemented and public health efforts to increase disclosure, rates of disclosure to sexual partners among people living with HIV (PLWH) remain low, suggesting the need for interventions to assist PLWH with the disclosure process. We conducted a systematic review of studies testing whether HIV serostatus disclosure interventions increase disclosure to sexual partners. We searched six electronic databases and screened 484 records. Five studies published between 2005 and 2012 met inclusion criteria and were included in this review. Results showed that three of the HIV serostatus disclosure-related intervention studies were efficacious in promoting disclosure to sexual partners. Although all three studies were conducted in the United States the intervention content and measurements of disclosure across the studies varied, so broad conclusions are not possible. The findings suggest that more rigorous HIV serostatus disclosure-related intervention trials targeting different populations in the United States and abroad are needed to facilitate disclosure to sexual partners.
    Full-text · Article · Feb 2015 · AIDS and Behavior
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    • "Deribe et al. also highlighted the association, in women, between disclosure and perceiving one's relationship as a lasting one [29]. Trust in the partner's capacity to keep the PLHIV's seropositivity confidential, in order to protect the household, may limit worries associated with disclosure and facilitate the decision [36]. In our study, the majority of people who declared that they were married or in a couple lived with their partner. "
    [Show abstract] [Hide abstract] ABSTRACT: HIV disclosure to a steady sexual partner (SSP) is important both in preventing HIV transmission and improving the quality of life of people living with HIV (PLHIV). Its determinants have been poorly investigated in the Democratic Republic of the Congo. The study objective was to determine factors independently associated with voluntary disclosure to one's SSP in PLHIV receiving services from a Congolese community-based organization (CBO). A community-based participatory research was performed and 300 PLHIV were interviewed by members of the CBO, using a standardized questionnaire. A multivariate logistic regression was used to determine the variables independently associated with disclosure. In this sample, 79 of the 127 participants (62%) included in the analysis declared having voluntarily disclosed their serostatus to their SSP. Declaring to be in a relationship (Odds Ratio (95% Confidence Interval): 4.2 (1.4-12.6)), having tested for HIV because of symptoms (2.5 (1.0-6.4)), having taken the test on one's own initiative (3.2 (1.3-8.0)), having felt sympathy and indifference from people when disclosing (6.0 (1.4-26.9) and 5.0 (1.1-22.8), respectively) as well as having a higher score of the "regular discussion about daily life with HIV" index (1.7 (1.1-2.5)) were significantly associated with disclosure to one's SSP. Several individual and contextual factors were associated with voluntary disclosure to SSP in this study, highlighting the complex nature of the disclosure process. Interventions encouraging disclosure should be designed so as to adapt to one's personal life with HIV as well as psychosocial environment.
    Full-text · Article · Nov 2014 · Pan African Medical Journal
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