AIDS Care, 2015

Vol. 27, No. 4, 451–457, http://dx.doi.org/10.1080/09540121.2014.963497

HIV disclosure and nondisclosure among migrant women from sub-Saharan Africa living in
Switzerland
Brikela Sulstarovaa*, Francesca Poglia Miletib, Laura Mellinib, Michela Villanib and Pascal Singya
a
Psychiatric Liaison Service, Lausanne University Hospital, Lausanne, Switzerland; bDepartment of Social Sciences,
University of Fribourg, Fribourg, Switzerland
(Received 15 May 2014; accepted 4 September 2014)

No study to date has focused specifically on the reasons for and against disclosure of HIV-positive status among sub-
Saharan migrant women. Thirty HIV-positive women from 11 sub-Saharan countries living in French-speaking
Switzerland participated in semi-structured individual interviews. The reasons women reported for disclosure or
nondisclosure of their HIV serostatus were classified into three categories: social, medical, and ethical. The women
identified the stigma associated with HIV as a major social reason for nondisclosure. However, this study identifies new
trends related to disclosure for medical and ethical reasons. Being undetectable played an important role in the life of
sub-Saharan migrant women, and analysis revealed their medical reasons for both disclosure and nondisclosure.
Disclosure to new sexual partners occurred when women had a more positive perception about HIV and when they
believed themselves to be in a long-term relationship. Women reported nondisclosure to family members when they did
not need help outside the support provided by the medical and social fields. The results on ethical reasons suggested that
challenging stigma was a reason for disclosure. Since the women’ perceptions on HIV changed when they came to see it
as a chronic disease, disclosure occurred in an attempt to normalize life with HIV in their communities in migration and
to challenge racism and discrimination. Our findings can help health providers better understand the communication
needs of sub-Saharan migrant women with respect to HIV/AIDS and sexuality and offer them adequate disclosure
advice that takes into account migration and gender issues.
Keywords: HIV/AIDS; sub-Saharan migration; women; disclosure; stigma

Introduction 2006; Foley, 2005; Othieno, 2007; Rosenthal et al.,

Although they were invisible at the beginning of the
HIV/AIDS epidemic, it is recognized today that approxi-
mately half of people living with HIV (PLWH) in the
world are women. This rate increases to about 60% for
women living in sub-Saharan Africa. In Switzerland,
migrant women from sub-Saharan Africa represent 56%
of all new HIV diagnoses through heterosexual trans-
mission [Federal Office of Public Health (FOPH), 2013].
Besides biological factors that make women more prone
to HIV infection (Higgins, Hoffman, & Dworkin, 2010),
social, economic, and cultural factors compound their
vulnerability. A lack of power in negotiating safer sex
practices with partners, sexual violence, and genital
mutilation are major factors increasing sub-Saharan
women’s risk of contracting HIV (Moore & Amey,
2008; Moore & Oppong, 2007; Painter et al., 2007).
Studies related to the experiences of African migrants
living with HIV/AIDS show they face several barriers to
accessing HIV services, lack accurate information about
HIV transmission and prevention, and are more inclined
to have late HIV testing (Anderson & Doyal, 2004;
Burns, Imrie, Nazroo, Johnson, & Fenton, 2007; Dodds,
2003).
In recent years, highly active antiretroviral therapy
(HAART) developed in western countries has trans-
formed HIV from a fatal disease to a chronic, manage-
able infection (Rodkjaer, Sodemann, Ostergaard, &
Lomborg, 2011; Shacham, Small, Onen, Stamm, &
Overton, 2012). However, while medically normalized,
HIV/AIDS is not yet socially normalized (Mellini,
Godenzi, & De Puy, 2004). Research shows that HIV
remains highly stigmatized throughout the world, parti-
cularly among sub-Saharan people, both in their home
countries (Ajala & Adejumo, 2007; Mwinituo & Mill,
2006; Suleiman, 2007) and in their host countries,
especially in their communities (Flowers et al., 2006).
Many studies have explored reasons for disclosure
and nondisclosure among PLWH in western countries.
The few that have covered this topic for African
migrants living with HIV (Calin, Green, Hetherton, &
Brook, 2007; Stutterheim et al., 2011) showed that
stigma plays an important role in nondisclosure deci-
sions. The reasons most frequently cited for nondisclo-
sure are fear of stigmatization, a belief that HIV status is
a private matter, a desire to protect others from worries,

*Corresponding author. Email: Brikela.Sulstarova@chuv.ch

© 2014 Taylor & Francis

452 B. Sulstarova et al.
and a lack of close relationships. Reasons reported for
disclosure are having a close and trusting relationship;
having a duty to inform partners; and wanting to benefit
from support, educate others on sexual risk taking, and/
or interact with other PLWH (Calin et al., 2007;
Stutterheim et al., 2011).
How women from sub-Saharan Africa living in other
countries manage information about their HIV-positive
status is limited to some studies analyzing their life
experiences with HIV (Anderson & Doyal, 2004; Doyal,
2009; Doyal & Anderson, 2005). These limited studies
have not focused specifically on these women’s motiva-
tions for disclosure and nondisclosure. Further invest-
igation is needed, first, because HIV remains relatively
prevalent among migrant women from sub-Saharan
Africa. Second, studies have shown that HIV affects
women and men of this group differently. For instance,
the desire to have children is strong among these women,
who consider motherhood a source of identity and
legitimacy (Doyal & Anderson, 2005). In addition,
breast-feeding is perceived as essential to motherhood
(De Allegri, Sarker, Hofmann, Sanon, & Böhler, 2007;
Hofmann, De Allegri, Sarker, Sanon, & Böhler, 2009),
and not breast-feeding among sub-Saharan mothers
under HAART is highly stigmatized (Abiona et al.,
2006; Samuelsen, 2006). Finally, qualitative research
(Calin et al., 2007) focused on the subjective perceptions
of HIV-positive sub-Saharan migrant women and the
reasons they disclose or not may help health care
providers better understand their concerns and respond
adequately to their needs. Our study examines the
reasons for disclosure and nondisclosure reported by
these women living in Switzerland in the era of rapid
transformation of HIV from a fatal disease to a chronic,
manageable infection.
Methods
Data were collected from in-depth, semi-structured
individual interviews (Kaufman, 1996) with 30 HIV-
positive migrant sub-Saharan women living in French-
speaking Switzerland. All interviews were conducted by
two researchers (authors of this article) between Decem-
ber 2012 and September 2013. Interviews lasted about
2.5 hours and were audiotaped and transcribed. Migrant
women were recruited from specialist HIV clinics at two
hospitals, and from AIDS associations and health
programs for migrants (Villani, Poglia Mileti, Mellini,
Sulstarova, & Singy, in press). Ethics committees at two
Swiss university hospitals granted approval. To particip-
ate in the study, migrant women had to be age 18 and
older, born in a sub-Saharan country, diagnosed HIV-
positive, and living in Switzerland for at least 1 year.
Interviews were conducted at the hospitals and associa-
tions or in the respondents’ home according to the
women’s preferences. Before starting interviews, partici-
pants were introduced to the study and assured that all
information gathered would remain confidential. They
also signed a consent form and received modest financial
compensation at the end of interview.
The interview focused on four themes: migration,
HIV/AIDS trajectory, disclosure and nondisclosure, and
perceptions about sexuality and HIV/AIDS. To measure
the women’s personal social network, an innovative
methodological instrument was elaborated (Poglia Mileti,
Mellini, Villani, Sulstarova, & Singy, in press). Women
were invited to list all people belonging to their social
network from their home and host countries and to put
them in different social spheres (e.g., family, partners,
work, community, health care, associations, religion,
administration). Then they were asked about the signific-
ance of the relationships to them, to whom among their
contacts they had disclosed their status, and to whom they
had not and for which reasons.
Respondents were between ages 25 and 57, and from
11 countries (Angola, Burkina Faso, Cameroon, Ivory
Coast, Guinea, Mozambique, Democratic Republic of
the Congo, Rwanda, Senegal, Togo, Zimbabwe). With
the exception of four women, all reported being diag-
nosed after coming to Switzerland. Most women
reported being undetectable at the time of the interview.
Sociodemographic data were collected (Table 1). Most
women had migrated alone and mentioned various
reasons for migration, including an unstable political
situation, fleeing war, abuse, and poverty, and pursuing
education. Only a few women identified the need for
medical care as a reason for coming to Switzerland.
Data were analyzed using content analyses and
NVivo 10 (QSR International 2010). According to
grounded theory research (Glaser, 1978), we used
concurrent interview data collection and constant com-
parative analysis. After analyzing the first seven inter-
views, tree coding was generated, including categories
related to disclosure and nondisclosure and their proper-
ties related to reasons, context, and strategies. During
coding and with further data collection, emerging
categories about types of secret or disclosure process
were developed and changes made to existent ones
(Blanchet & Gotman, 1992). Analysis continued until
no new categories or subcategories emerged and theor-
etical saturation was reached. The data were analyzed
with sociological and sociolinguistic approaches.
Results
Disclosure and nondisclosure in social spheres
As showed elsewhere, women mostly disclosed their
status to a limited number of significant relationships
(Poglia Mileti et al., in press).1 They considered two
 AIDS Care 453

Table 1. Sociodemographic characteristics of sample (n = 30). Indeed, the reasons for nondisclosure that prevail in the
social category are fear of stigmatization and exclusion
Variable n % (e.g., fear of gossip in sub-Saharan communities, avoid-
Age (years) ance of differential treatment and relationship breakups,
18–29 6 20 a desire to protect others, and maintain a normal social
30–39 14 47 identity).
40–49 9 30
50–60 1 4
Immigration status Disclosure and nondisclosure for medical reasons
Documented 21 70 Reasons for disclosure and nondisclosure related to
Undocumented 9 30
medical issues included progress of HIV serostatus, state
Marital status
of health, and preventive measures to protect others from
Single 8 27
Married 9 30 HIV risk. Reasons for disclosure prevailed in this
Divorced 9 30 category. Distress and shock over the initial diagnosis
With a partner 4 13 was a reason some women disclosed their status,
Children especially those diagnosed during antenatal tests. They
With children 22 73 felt that hearing their HIV seropositive status was a death
Without children 8 27 sentence and so needed to share the terrible news with
Employment status family members:
Employed 10 33
Unemployed 18 60 I told them [siblings] because I was shocked, you see?
Student 2 7 (Béatrice)
Level of education
Illiterate 1 3 This reason is emotion laden, but liberation from the
Primary 8 27 burden of the secret can also be a matter of psycholo-
Secondary 16 53 gical health. Some women said the burden became
Bachelor’s + 5 17 heavier over time and so needed to disclose to relatives:
Means of transmission
Sex 17 57 I went to spend the week-end with my niece. I had that
Blood transfusion 1 3 on my heart, I didn’t want to keep it for myself, so I
Unknown 12 40 confided. (Xénia)
Time since diagnosis (years)
Less than 2 5 17 Another reason for disclosure was advice given by
2–5 5 17 medical staff, who encourage women to inform their
6–10 10 33 sexual partners and are ready to help them communicate
More than 10 10 33 their status:
Treatment
Antiretroviral therapy 27 90 I told my doctor that I had met someone. He then told
No therapy 3 10 me: “Listen, you can tell him.” I was scared. And my
doctor told me that if I am too scared to talk to him, he
would help me. (Gabrielle)

Disclosure to ex-partners also occurred, in order to find

social spheres secure for disclosure: the medical field
out the source of transmission. In their struggle to make
and associations engaged in fighting HIV/AIDS. Dis-
sense of their disease, women wonder how, when, by
closure occurred mostly to stable partners, select family
whom, and why they contracted it:
members, and sub-Saharan HIV-positive friends. Nondi-
sclosure was usual in three social spheres: sub-Saharan I called him and I told him, “Listen, I have a problem,
communities in migration, religion communities, and I have this and that. Did you give me that?” He told me,
work. Our data show that keeping HIV serostatus secret “So what? And if someone has given to me, why can’t I
is a lifelong challenge for sub-Saharan migrant women, give it to you?” (Nina)
who must constantly reinvent strategies for concealment
Induced by the goal of prevention and a desire to
(Poglia Mileti et al., in press). Through systematic
encourage relatives to get HIV testing, some women
analysis, we classified reasons for disclosing HIV
disclosed their status to help others realize the risk of
serostatus or not into three categories: social, medical,
HIV transmission and to promote safe sex:
and ethical. Here we focus on the medical and ethical
categories, since social reasons are already well docu- I always announced it in particular circumstances. My
mented (Calin et al., 2007; Stutterheim et al., 2011). brother told me: “I have the flu, I have to get tested?”
454 B. Sulstarova et al.
And then I told him: “Yes. You know why? Because I’m
seropositive.” (Mireille)
A medical reason for nondisclosure was practicing safer
sex with casual partners. Women said using condoms
justified their silence toward casual partners since they
perceive the risk of transmission as negligible. Nondi-
sclosure to partners was also linked to the meaning
women attribute to short-term relationships:
They’re transient relationships, nothing serious. If we
protect ourselves, we don’t need to talk. (Béatrice)
Finally, being undetectable was a medical reason that led
women to both disclosure and nondisclosure. Being
undetectable and in good health gave some women a
sense of well-being. They saw no sense in disclosing to
family and friends because they felt in good health:
When I don’t go to the hospital, I don’t feel sick, I never
got that into my head. My mother, my parents, nobody
knows. (Thérèse)
Other women, in contrast, reported being undetectable as
a reason for disclosure. Since their perceptions about
HIV changed to them seeing it as a chronic disease, they
had the courage to disclose to new sexual partners when
they believed they would have a long-term relationship:
I also told him the truth, because I knew I was
undetectable, the doctors had told me I could live like
the others with no problem, the treatment works well,
and I told him the truth. (Céline)
Disclosure and nondisclosure for ethical reasons
With respect to ethical reasons, women reported concern
for morality, rights, and obligations. Disclosure to sexual
partners seems related to relationship stability. With
stable partners, women considered disclosure a moral
obligation, not only to protect them from HIV transmis-
sion and encourage partners to get testing, but also
because of the trust and honesty they value in a stable
relationship:
It wasn’t easy for me to tell him, but I told him so that he
could get tested. He did it the day after … It was a relief,
a big relief. (Mireille)
Some women chose to disclose their serostatus as a
claim to dignity, to be treated with respect. Indeed, facing
discrimination as sub-Saharan women, they perceived
disclosure as an active response to racism by affirming
their dignity as a PLWH:
Because I was very tired and I couldn’t work, my
mother-in-law said Africans profit from the system and
then I decided to tell her. (Astrid)
With intra-community discrimination, women reported
disclosing to select sub-Saharan friends as a step toward
autonomy and out of a desire to end humiliation and
normalize life with HIV in their communities in migra-
tion. Some women decided not to accept the stigma
passively but to challenge it by affirming that even
though they are HIV-positive, they are just as normal as
other people:
I told her that I hadn’t stolen the disease, I didn’t buy it.
It just happened so I don’t want to hide anymore. If I
want to tell someone, I will. (Zoé)
For nondisclosure, some women reported considering
their HIV serostatus a private question, believing that it
should not be revealed everywhere and without reason:
I always tell myself it’s a personal question. Health is
only your business. Somebody else’s health doesn’t
concern me, to learn about [it], even if it’s not HIV.
(Hélène)
Finally, another ethical reason led respondents to both
disclosure and nondisclosure. Every time women came
in contact with institutions and administrative services,
they confronted the dilemma of whether to disclose their
HIV serostatus. The decision depends on the women’s
evaluation of their rights and obligations. Women
concerned with the uncertainty of their legal status report
having felt an obligation to disclose in order to facilitate
their stay in the host country:
I told the lawyer because he defends me. In Bern [at the
Federal Office for Migration] I have already told that I
am seropositive. (Pauline)
In other cases, particularly documented women did not
believe they had any obligation to disclose their HIV
status to social and administrative services that are not
supposed to know about their health status:
I have never disclosed … I do not see the reason. For
example, I don’t see why I have to disclose it to my job
adviser. (Fabienne)
Discussion
Our findings related to social reasons are in line with
previous studies on sub-Saharan migrants (Calin et al.,
2007; Stutterheim et al., 2011): fear of stigmatization and
rejection are the major reasons sub-Saharan migrant
women’s nondisclosure. From their perspective, the
stigma associated with HIV is still heavy in their
communities in migration. Although having accumulated
vulnerabilities of being migrants, women, HIV-positive,
and from sub-Saharan Africa (Dieleman, 2008), our
study shows that participants were not only victims but
also agents in their own life (Poglia Mileti, Villani,

Sulstarova, Mellini, & Singy, 2014), as the following
three emergent trends show.
First, our findings highlighted that thanks to
HAART, being asymptomatic and living mostly healthy
with HIV allows women to choose to disclose or not
their HIV status. Moreover, for most respondents, being
undetectable was a very important matter in their life.
Some mentioned it as a reason for nondisclosure, since
they do not need other support outside the professional
field. Others who learn they are undetectable choose to
disclose to new sexual partners when they believe
themselves to be in a long-term relationship, as their
perceptions of HIV became more positive given the
medical information they received.
Second, if disclosure is mostly a consequence of
evaluating costs and benefits (Derlega, Winstead,
Greene, Serovich, & Elwood, 2004; Serovich, Lim, &
Mason, 2008), our study suggests that sub-Saharan
migrant women also confront the concept of rights and
obligations. Since they are living in a society where
these are clearly defined, women become more aware of
their own rights and obligations as migrant and HIV-
positive people. The evaluation of risks and benefits
associated with the knowledge of rights and obligations
leads them to disclose their status or not to institutions in
the host country.
Third, our results indicate that disclosure sometimes
occurs to reduce multiple stigmas. Accepting a new
identity as PLVH, some women decide to disclose to
challenge racism or discrimination. Others prefer selective
disclosure in their communities to challenge the stigma
associated with HIV, making a claim for the “social
normalization” of HIV. These findings are in line with
research conducted in sub-Saharan countries on the
positive consequences of HIV disclosure in reducing
stigma (Abrahams & Jewkes, 2012; Bott & Obermeyer,
2013). Since there is a gap between women’s and
communities’ perceptions of HIV, it remains unclear how
women’s disclosure can bring positive changes. This area
requires more research.
The current study has some limitations related to the
qualitative nature of the data and sample. The women are
not representative of all sub-Saharan countries, and one
country (Cameroon) is overrepresented. Nevertheless,
the sample reflects the origin of the African population
living in Switzerland. There is also potential bias due to
recruitment strategies, as we recruited respondents
through intermediate medical and social professionals.
Our findings have several implications for HIV
health providers. Sub-Saharan migrant women may
benefit from systematic, ongoing communication with
them about questions linked to disclosure. It is important
that after diagnosis, health providers reiterate the discus-
sion about communication strategies regarding disclos-
ure and nondisclosure, and the impact of this on the
AIDS Care 455
woman’s life, since managing information about one’s
HIV-positive status is a lifelong process. They should
advise women with partners on not only how to talk
about HIV but also how to communicate about sexuality
with HIV in the relationship, which is a concern for sub-
Saharan migrant women (Poglia Mileti et al., 2014).
Further research is needed on the disclosure strategies
women use and how they communicate about sexuality
with HIV with their partners. We also recommend that
communication skills training for health providers
include counseling strategies for disclosure issues that
are appropriate to migrant populations’ needs and
sensitive to gender issues.
Acknowledgments
The authors thank all the study participants. They also thank
the AIDS associations and hospital clinics for their efforts in
recruitment’ process.
Funding
The study was supported by the Swiss National Science
Foundation [grant number 100017_1404].
Note
1. Our aim in the qualitative methodology was not to estimate
prevalence of disclosure.
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