Issues in Mental Health Nursing, 34:150–157, 2013
Copyright © 2013 Informa Healthcare USA, Inc.
ISSN: 0161-2840 print / 1096-4673 online
DOI: 10.3109/01612840.2012.740765
“You Comfort Yourself and Believe in Yourself”: Exploring
Lived Experiences of Stigma in HIV-Positive Kenyan Women
Peninnah M. Kako, RN, PhD, FNP, BC, APNP and Rebekah Dubrosky, RN, BSN,
Doctoral Student
University of Wisconsin—Milwaukee, College of Nursing, Milwaukee, Wisconsin, USA
HIV-related stigma has a negative effect on women’s health
and can hinder interventions aimed at eradicating HIV. In Kenya,
women withstand the worst of HIV-related stigma, because they
are the most affected. In this longitudinal qualitative study, we
explored experiences of stigma among 54 HIV-positive Kenyan
women. Using Goffman’s stigma definition and Foucault’s social
construction of stigma to analyze women’s narratives, two main
themes emerged: (1) women’s experience of socially constructed
HIV-related stigma and (2) women’s resistance of socially con-
structed HIV-related stigma. Even though women are creative in
resisting HIV-related stigma, psychological impact of stigma can
hinder HIV prevention, care, treatment, and support. Interven-
tions that empower women are critical in reducing HIV-related
stigma.
HIV-related stigma has detrimental effects on HIV pre-
vention, treatment, care, and support. In sub-Saharan Africa,
60% of the 22 million persons living with HIV are women.
Women in sub-Saharan Africa, also care for 90% of the world’s
AIDS orphans (UNAIDS, 2010). In Kenya where 1.5 million
people are living with HIV, women are two to three times more
likely to be HIV-positive compared to their male counterparts
(National AIDS and STI Control Programme [NASCOP] &
Ministry of Health Kenya, 2009). Because women are the most
affected and infected by HIV, they are at an increased risk
for HIV-related stigma (Otieno, 2007). As caretakers of their
families, including HIV+ family members, women bear the
psychological and emotional burdens related to HIV, putting
them at increased risk to suffer mental illness in a country
that lacks adequate mental health facilities and practitioners
(Mwaura, 2008; Wingood et al., 2008). Already disempowered
as a result of their gender status, women diagnosed with HIV
are at a greater risk than their male counterparts of being
ostracized by their communities, of losing ways to earn their
livelihoods, and of being completely disempowered from the
decision-making processes of their communities (Murphy,
Address correspondence to Peninnah M. Kako, University of
Wisconsin—Milwaukee, College of Nursing, P.O. Box 413, Milwau-
kee, WI 53201–0413. E-mail: pmkako@uwm.edu
150
Roberts, & Hoffman, 2002). HIV-related stigma must be
addressed within the communal and cultural context in which
these women live. Understanding the stigma experiences of
HIV-positive women is important for designing life-saving
interventions that are gender sensitive and culturally relevant.
BACKGROUND
While much has been written about HIV/AIDS in Kenya,
there is a paucity of literature describing the lived experiences of
stigma in HIV-positive Kenyan women. HIV-related stigma can
have detrimental effects on women, including deterring them
from accessing critical health care for fear of being stigmatized
if found to be HIV-infected (Nyblade, Singh, Ashburn, Brady,
& Olenja, 2011; Turan, Miller, Bukusi, Sande, & Cohen, 2008).
Much of the Kenyan literature describes how people choose to
disclose their status (Gillett & Parr, 2010). Some of the literature
focuses on the impact of stigma and the need for its reduction
without specifically eliciting HIV-positive women’s voices on
their experiences.
The HIV epidemic has contributed to increasing HIV-related
burdens that women bear in Kenya; HIV-related stigma affects
how women live both their private and public lives and leads to
denial of the existence of HIV infection, which hampers HIV
prevention efforts (Otieno, 2007). In Kenya, HIV-related stigma
particularly affects women by making them even more vulner-
able in a patriarchal culture that engenders male domination
and female subordination (Mwaura, 2008). HIV-related stigma
in Kenya continues to be pervasive especially among women.
In some cases women are forced to relocate once they are
diagnosed with HIV for fear of being stigmatized (Amuyunzu-
Nyamongo, Okeng’O, Wagura, & Mwenzwa, 2007). Fur-
thermore, fear of being stigmatized can impede progress in
HIV-treatment research by, for example, impacting HIV-vaccine
study participation (Nyblade et al., 2011). A recent study by
Cuca, Onono, Bukusi, and Turan (2012) conducted among preg-
nant women in rural Kenya found that over half of the women
interviewed had experienced HIV-related stigma. What is even
more troubling is that HIV-related stigma jeopardizes urgently
 LIVED EXPERIENCES OF STIGMA
needed improvement in maternal health. A study by Turan et al.
(2008) found that HIV-related stigma was a critical element in
women’s avoidance of delivering in health care facilities. Water-
man et al. (2007) study of home-based community workers cited
avoidance of stigma as the main reason people were unwilling
to participate in community-based activities that would support
those affected by or infected with HIV. Our study adds to the
current literature on women experience of HIV stigma in Kenya
because in addition to exploring HIV-positive women’s expe-
riences we also explore their ways of coping in the context of
their social cultural existence. Health care workers, researchers,
policymakers, and other stakeholders involved in HIV-related
work must define stigma in relation to local community contexts
that incorporate women (Hamra, Ross, Orrs, & D’Agostino,
2006).
STIGMA DEFINITION
Goffman (1963) defined stigma as an attribute that a person
possesses that marks the person as different from the rest of
the community. Types of stigma identified by Goffman (1963)
included felt stigma (defined as the shame that the stigmatized
person feels) and enacted stigma (defined as the prejudicial re-
action from community members to the person who is marked
as somehow different) (Buseh & Stevens, 2006; Goffman, 1963;
Waterman et al., 2007). Stigma is a socially constructed experi-
ence that causes the stigmatized to feel incompletely integrated
or accepted into their culture or society. Mwaura (2008) argues
that HIV-related stigma is a human rights issue and posits that
when stigma is acted upon, discrimination ensues resulting in
unjust treatment of women living with HIV and who also care
for their ill family members living with HIV.
The social experience of stigma is strongly supported by Fou-
cault’s work (Foucault, 1986). Foucault described places that
he termed heterotopias, “other spaces” that a society creates for
those who do not fit within society’s norms (Foucault, 1986). He
identified two types of heterotopias. The first heterotopia space,
the heterotopia of deviance, was used to describe people who
fall outside the norm of a society (Persson & Richards, 2008).
For instance, according to Foucault, people who are mentally
ill, elderly, or very young are held outside of society in a sort of
extra-societal space; this space is also reserved for people whose
behavior deviates from the norm (Johnson, 2006). Second, he
described heterotopias of crisis. These heterotopias of crisis
apply to people with certain stigmatizing illnesses, including
HIV/AIDS. The moment that the disease is recognized in a per-
son is the moment that he or she is placed in these heterotopias,
which causes them to be isolated and set aside from the social
space around them (Persson & Richards, 2008). Goffman and
Foucault’s works complement each other and offer compelling
analytic lenses through which to view the role of culturally con-
stituted stigmatization that is central to the establishment and
maintenance of the social order (Parker & Aggleton, 2003). In
this article, we explore stigma using Goffman’s (1963) definition
151
of stigma and Foucault’s (1986) heterotopias as a framework
for our data analysis to understand how HIV-positive Kenyan
women experience and deal with HIV-related stigma. By com-
bining Goffman’s seminal definition of stigma and Foucault’s
framework, which acknowledges the societal process of stigma-
tization in creation of other spaces, we aim to center women’s
nuanced stigma experiences within the social-cultural context of
their experiences (Van Hollen, 2010). While we sought to offer a
forum where women voices could be heard by elicited individual
narrative experiences, using a framework that includes a social
process lens helps us to acknowledge the familial and communal
context of Kenyan women’s lives as they try to make sense of
their stigma experiences. In this article, we focus on women’s
experience of stigma; findings on women’s innovative capacity,
their faith characterizations of God, and older women’s role in
HIV prevention are being considered for publication elsewhere
(Kako, Kibicho, Mkandawire-Valhmu, Stevens, & Karan,
in press; Mkandawire-Valhum, Kako, Kibicho, & Stevens,
in press; Mkandawire-Valhum, Kako, & Kibicho, 2012).
METHODS
Approach
Longitudinal qualitative narrative methodology informed by
post-colonial feminism was utilized to collect data for this study
(Anderson, 2004; Racine, 2003; Reissman, 2008). Narrative in-
quiry seeks to elicit stories from participants narrated in ways
the participant sees fit (Mweti, 2008; Reissman, 2008). Stories
are empowering and rapport-building (Stevens, 1996). Rather
than characterizing African women as poor and disempowered,
in using post-colonial feminism to inform our study, we hoped to
amplify their strengths and acknowledge their subaltern knowl-
edge in resisting HIV-related stigma (Spivak, 1996). By engag-
ing women to elicit their voices, we expected to create a platform
where women could tell their stories, presenting an opportunity
for their muted voices to be heard.
Sample and Setting
Fifty-four women who self-identified as HIV-positive were
recruited for this study—23 women were from a rural east-
ern province and 31 were from urban Nairobi. Women were
included for the study if they were 18 years old or older, self-
reported as HIV-positive, and able to speak English, Kiswahili,
or Kikamba. The average age was 37 years (SD = 9.63). Par-
ticipants had an average of eight years of formal schooling with
five (9%) of the women reporting that they had never attended
school. Women had an average of three children. Of the women,
40% reported being married, and 25% were widowed. The av-
erage number of years since being diagnosed with HIV was 4.4
(SD = 3.85). Women living in rural areas expressed more so-
cially enacted stigma experiences, because their neighbors were
aware of the fact that these women were making frequent clinic
visits; women in urban settings reported more self-stigma.
152 P. M. KAKO AND R. DUBROSKY
Procedures
Data from this project were drawn from a larger longitudinal
study exploring HIV transmission risk, treatment access, and
self-care management for women living with HIV in Kenya.
Repeated interviews were conducted over a period of six
months between July 2009 and March 2010. In total, 122
interviews were completed—15 women were only available for
one interview, 39 completed two interviews, and 29 completed
all three interviews. The quality of the women’s narrative
interviews was sufficient to reach data saturation (Morse, 1995).
Interviews were conducted in English, Kiswahili, and Kikamba
(the language spoken in the eastern province—rural site). The
first author, familiar with all three languages, conducted the
interviews. The research team developed a semi-structured
interview guide based on previous research (Kako, Stevens, &
Karani, 2011); content was validated with a sample of local
women. Using a translator proficient in the three languages,
the interview guide was translated into Kiswahili and Kikamba
and back translated to English, finally the translations were
compared to ensure congruency (Brislin, 1970). The final
interview guide was adjusted based on feedback from a sample
of local women before beginning data collection (see Table 1).
The interview questions were used as a guide; women were
encouraged to tell their stories as they wished. The interviews
were digitally recorded and transcribed by a research assis-
tant proficient in all three languages. The first author who is
fluent in all three languages and conducted all interviews re-
viewed the transcribed and translated interviews, comparing
them with the original recordings and field notes making ad-
justments as needed to ensure translation accuracy. Because
translation-related decisions can affect the validity of the re-
search and its findings, to ensure consistency and consistent
meaning of concepts such as stigma and discrimination, all in-
terviews were conducted by the first author (Birbili, 2000).
Ethical Issues
All research procedures were approved by the appropriate
human subjects review boards in the United States and in
TABLE 1
Interview Guide
Semi-Structured Interview Questions
• What is it like living with HIV in this community?
• Have you been discriminated against because of your HIV
status?
• Tell me what happened.
• How was that for you?
• Have you witnessed others experiencing discrimination or
being stigmatized in your community?
• Tell me what happened.
• How was that for you?
Kenya before commencing recruitment. To recruit participants
for our study, we used purposive sampling, a deliberative ap-
proach in which participants are invited to participate based
on the rich information they are likely to yield about the study
phenomena (Patton, 1990). Only women who were 18 years
and older, self-identified as HIV positive, were well enough
to engage in the interviews, could speak English, Kiswahili,
or Kikamba, and voluntarily consented to participate were
included in the study. Nursing staff at rural and urban clinics
informed the women about the study; those women who were
interested met with the first author who further explained the
study. Consent and written statement about the study were
translated to Kiswahili and Kikamba using Brislin’s (1970) back
translation methodologies. All participants were given a copy
of the written statement about the study and a consent form.
Participants were informed of the voluntary nature of the study
and that they were free to withdraw from the study or decline
to answer any questions for whatever reason. Oral consent
for participation and written permission for audio-taping were
obtained before beginning the interviews. The first author, who
collected all the data, first obtained the oral consent to partici-
pate in the study by reading the consent to the participant in the
participant’s language of choice. After voluntary oral consent
was obtained, the first author then read the written audio-taping
permit to the participant and sought a signature. Participants
who could not read or write gave permission by placing an
“X” on the signature line to give permission to audio-tape the
interview. Participants were assigned pseudonyms to maintain
anonymity. Raw data remains securely stored and is available
only to members of the research team.
Data Analysis
After obtaining permission from participants, interviews
were conducted in English, Kiswahili, or Kikamba based on the
participant’s preference. The interviews were digitally recorded
for later transcription and translation. Transcribed and trans-
lated interviews were coded using NVIVO software (Richards,
2005). The first author reviewed the translated and transcribed
transcripts, comparing them to the original recordings and the
field notes and made adjustments as needed. The authors then
independently read and re-read the transcripts to ascertain the
trustworthiness of the data and to look for emerging themes rel-
ative to the stigma experiences of the women (Hall & Stevens,
1991). To ensure that the women’s voices remained central to our
analysis, we employed reflexivity throughout the data collection
and analysis being cognizant of our own privileged positionings
(Racine, 2003). The authors discussed themes that emerged and
re-adjusted these themes once consensus was reached.
RESULTS
The women in this study were aware of the impact that their
HIV/AIDS status could have on their lives. Due to the com-
munal nature of Kenyan society, the women had to recognize
 LIVED EXPERIENCES OF STIGMA
that their diagnosis and disclosure would affect them as well as
the communities in which they lived. Using Goffman’s stigma
definition and Foucault’s idea of socially constructed stigma,
two main themes emerged: women experiencing socially
constructed HIV-related stigma and women resisting socially
constructed heterotopias.
Experiences of Socially Constructed HIV-Related Stigma
Women’s experiences with socially constructed HIV-related
stigma included being placed into heterotopia of crisis; namely,
being set aside, disempowered, seen as a curse, mocked, and
labeled as having deviant behavior. When a woman received
confirmation that she was HIV-positive, or already had AIDS, it
was a devastating event. The women in this study describe being
distraught, some to the point of contemplating suicide. From the
moment of diagnosis, the women spoke of being placed outside
their society; they now existed in the crisis heterotopia that
belongs solely to those with HIV/AIDS. They did not ask to join
this group, nor could they refuse membership; just knowing their
status placed them there. The moment of diagnosis represented
their entry into this heterotopia of crisis.
Set Aside
The women’s experiences show that being placed in the het-
erotopias was a deep social process in which they felt marginal-
ized and unwanted. They used words like “shunned,” “set aside,”
or “kept aside” to describe their experiences. Yet women tried to
rationalize their experiences, drawing compromises so that they
could continue to live. One woman explained poignantly what
happened when she told her sister that she was HIV positive:
Yes, I told her, and when I told her, she discriminated [against] me
and gave me my plates, sheets, blankets, and my own room; she [did]
not want me to share anything with her. But I [didn’t] stress, because
I fear[ed going] to stage two [antiretrovirals]. [In] stage two, I was
told, one keeps the medicine in the fridge, and my sister [would] not
allow me to keep the medicine in the fridge unless . . . I [was] at my
own house.
The women describe being shunned from the moment their
status was known. In communal societies such as in Kenya,
when one is not able to share in culturally meaningful routines
such as eating meals together, it can have a devastating effect
on the quality of life, as the excerpt below depicts:
The moment people know that you are HIV positive, some do not
want to share . . . a meal [with you] like . . . you have served me
[now], and some fear sharing . . . food, toilets, . . . bathrooms, even
rooms (bedroom[s]) [with us]. Yeah, [it] is that serious. Utensils . . .
some can’t share . . . the same plate [with you], and even if they are
washed, they are [heavily] disinfected.
Not only are these women placed outside of so-called normal
society by people in their villages and neighborhoods; they are
also placed in this crisis heterotopia by their immediate families,
whose first reaction is to distance themselves from the HIV-
153
positive member. Others described being abandoned and set
aside by their husbands:
Yes, so we stayed until . . . we were tested and the results were
positive. When he came to the hospital, I told him about it; he
disappeared for good, and he never came back. Yes, he took all his
things and left my clothes and those for the baby. I was so shocked.
Women saw the placement of the HIV clinic away from other
hospital services as a form of being set aside. In some cases, the
clinic was near the road where passersby could see and identify
women who had come to the clinic. Women also pointed out
that the clinic location exposed their reason for coming to the
health center. Women suggested that integrating HIV services
within the hospital would reduce the stigma of having a separate
building for HIV-related clinic visits:
If it [could] be brought inside the hospital, then it [would] be good
for us. You see, this is the road for everybody, even all the way from
my in-laws village; they all pass here. We really don’t feel good
about it. All the way from [nearby village], everybody passes here,
and they see us when we are being given the medicine.
Disempowered
We also see the women being placed firmly in an extra-
societal space that disempowers them and cuts them off from
community life as well as from the source of power and decision-
making. When these women are not invited to meetings, their
voices are silenced:
Sometimes, you go to places, and you are not given any duty to do
when there are meetings. Also, people may not allow you to hold
their things, . . . attend . . . their meetings, or even go [to] their places,
because some of them [do] not yet [understand the] ways of infecting
someone with the disease, so they think that [being close] to them
may infect them with the disease.
Women reported that stigma also affected their small-scale
businesses. They found that others would not buy from them if
they knew the women were HIV-positive, which further jeop-
ardized the women’s health. For most women, their small-scale
business was the only livelihood they had. One small-scale busi-
nesswoman expressed her concerns when asked how people
would react if they knew she was HIV-positive:
They will start talking. Like, now I sell vegetables; they will say to
others, “How can you buy vegetables from [her]? She has AIDS; she
has put that blood in the vegetables.” Now you see why do I have to
keep [from] telling them my status?
Another woman affirmed, “When [I] am selling things like milk,
since it is closed, they can come. With greens, I don’t know, they
can’t.” It is here, in this cutting off from power, that we begin to
decipher the impact of HIV stigma in the lives of women living
with HIV. Stigma creates an us-versus-them reality in which
“them” is undervalued and set aside. It creates the otherness
and the other space that becomes the stigmatized individuals’
heterotopia or space outside normal, everyday life (Johnson,
2006).
154 P. M. KAKO AND R. DUBROSKY
Seen as a Curse
This separation from the community becomes even more
pronounced when those living with HIV/AIDS are demonized.
Several of the women in this study discussed being put out of
their neighborhood or village following accusations of being
cursed: “When he died, the family members chased me, and
they dismantled the house. And I went back home . . . and when
I went there, there was no space for me, since I was an outcast.”
This woman describes how her family ostracized her after
she told them she was HIV-positive; we see even more how the
power dynamics are involved:
I had gone back to my parents’ where I slept for two days, and when
I explained [my situation] to them, they gave me fare, and they took
me to the bus to return to . . . Nairobi. They said that I was suffering
from a bad disease, that I would bring [a] bad omen [to] the family
and [that] they would face problems.
Even when these women are not banished from their commu-
nities, they are placed outside the normal flow of the community.
Gossip serves to remind them that they are definitely “others”
and serves to keep them in this place of otherness that becomes
the heterotopia of Foucault’s theory. When one woman was
asked what would happen if others found out that she was HIV-
positive, she responded, “I feel they will stigmatize me, thus
isolating me at all times.”
Mocked
Mocking and gossip are devastating to the lives of the women.
These types of enacted stigma place them on the outskirts of
society, adds stress to these women’s already-stressful lives,
and can even affect their ability to earn their livelihood, as one
woman reflects here:
[In] the area where I am, the people mock me, but where I have put
up my business, it is different from that, and no one knows about
my status, but the area where I used to be, no one could buy the
vegetables, and they would think that you would infect them.
The women identified HIV-related gossip as the most dif-
ficult thing they had experienced since being diagnosed with
HIV. When one woman was asked, “Since you’ve been sick,
what is the hardest thing that you have ever experienced?”
she responded, “Neighbors stigmatize you . . . Others [say] bad
things.”
Labeled as Having Deviant Behavior
Foucault discusses not only crisis heterotopias but also het-
erotopias of deviation. These heterotopias are reserved for those
whose behavior is outside of societal norms, such as crimi-
nals and prostitutes. Many of the women in the study described
being assigned to this extra-societal space as a result of their
HIV-positive status: “That one is hard, because people are not
[the] same. There are those who hate you, who see you as [a]
prostitute, who feel you don’t care for yourself, and I have de-
cided to be on my own.”
Another woman explained that the older men in the com-
munity blamed the women for the HIV: “They [think so poorly
of you]; especially the old men there in the community tend
to think that you moved outside the marriage and that’s where
you got the disease from.” The women often find this one of the
more difficult aspects of being known as HIV-positive.
Resisting Socially Constructed HIV-Related Stigma
The women in our study resisted socially constructed stigma
and thus resisted the heterotopia of deviance by keeping their
HIV status secret, using disclosure to ward off self-stigma, using
self-comfort, relocating, seeking support from women peers,
and finding comfort in their faith.
Keeping their HIV Status Secret
Women protected themselves by keeping their HIV status
secret:
So now, if they hear that that [the] HIV virus is what [I have], you see,
they will even move and leave me alone in the plot [apartment com-
plex]. They think that their children will contract that illness. That
is why I don’t want anyone to know. It is better [if only] I . . . know.
Another woman spoke of how she carefully selected whom
she could tell she was HIV-positive:
So you must be careful. Sometimes, if it’s my friend, and she does
not talk too much, I can tell her my secret. I will tell her I am like
this, even if you hear I have died, it is because of this illness that has
killed me.
Using Disclosure to Ward Off Self-Stigma
While some women used secrecy, others spoke of using dis-
closure to ward off stigma, deciding to go public and join sup-
port groups as a way of dealing with stigma. As one woman
summarized:
You go public to remove stigma, and to join the other people in
the groups, and love yourself, since the worst stigma is self-stigma.
And that’s the one that kills people—not AIDS. Because when you
hate yourself, you feel even those other people do not need you.
[You] should give love to [your] inner person . . . and have [faith]
that everything is possible.
Another woman spoke of how disclosure helped her deal
with stigma: “It is not hard, since it is the truth that you are
[choosing], and [there is] no need to hide, since when you hide,
you torture yourself.”
Using Self-Comfort
Women spoke of how they transitioned from self-hate by
encouraging themselves. This transition is not usually straight-
forward. Women engaged in continuous self-reflection, as one
woman explained:
There was stigma that made me start hating myself. I was feeling
like I was not worthy [of living]. But then I joined the support groups
and began to take medicine. Now I [am] encouraged, everything is
 LIVED EXPERIENCES OF STIGMA
working well, and I am bringing up my child well. It really affects
somebody; like when it comes to stigma, you feel you want to be
alone, eating becomes a problem, and you just need to be alone and
at times cry from inside.
Some women spoke of how they comforted themselves by
thinking of how their children would help care for them. Even
though the women were facing stigma, when they had children
who could care for them, they felt encouraged. As one woman
said, “They stigmatize me, but I comfort myself by saying that
my children will be there for me and care for me.”
Relocating
Some women relocated from their home to avoid the stigma
emanating from their families. One woman explained her expe-
rience:
He [my husband] told me, “I can see our father is scared, and he
doesn’t want us to use his things. Let us buy our own land.” This is
the time he said that he was going to give us land that was very far.
So we shifted to that land and we settled.
Seeking Support from Women Peers
Some women shared how they found support from others as
a way to mitigate HIV-related stigma. As one woman explained:
We sat and saw that maybe there [would be] a time when one [would]
be sick and [cast] aside by her own people, because many people
are stigmatized [at the end] when they develop those final signs. So
we said, “Anything can happen, and since we are positive, there is
[nothing] to fear . . .” We decided to look for friends who [were] like
us, and if one of us [was] sick, then we [would] go and work for her,
and we [would] make sure that every day there [was] a person to go
to visit her, and we [gave] her courage. That group is our own secret,
and they don’t know why we are together, since we are . . . mothers,
and [only] we know what we are doing.
Finding Comfort in Faith
Women reported that coping with the mental and social stress
of stigma is one of the most difficult aspects of living with
HIV and a prevailing threat to well-being. While stigma alien-
ates HIV-positive women from family and community, women
found ways to resist their placement into these heterotopic places
through their faith in God. As one woman explained:
You kind of stay alone and depend on God, since everybody feels
you have [a] problem. And [you call] God . . . and you [ask] God to
help you, and He helps you. So this disease is like that; once it gets
you, that is all, and it will never come out; that’s it. So I [ask] God to
help me to cope with this disease. With that prayer, everything will
[work out] well.
Another woman spoke of how her faith comforts her when
others gossip about her. As she said, “[The gossip hurts] me . . .
but the Bible comforts me and I forget about the bitterness.”
Another added how she has peace even when others do not treat
her well:
155
Even if you do something to me, I don’t take [it seriously], since even
the Bible teaches us not to get annoyed [all] day; it also teaches us to
forgive one another. So you [ask] God to forgive us and have courage
and hope in God . . . That is how I take any bad word spoken to me
or any thought stressing me, just like a passing wind that makes the
trees sway, and I forget about that thought completely . . . And when
you [choose that path], then you are at peace.
DISCUSSION
The findings from this study reveal that 30 years after the
first case of HIV was diagnosed in Kenya, HIV infection con-
tinues to be a highly stigmatized illness. The women in our
study reported experiences of socially constructed HIV-related
stigma. They found themselves held in extra-societal spaces,
being shunned and set aside and being labeled as having been
infected because of deviant behavior, such as infidelity or pros-
titution. As is evident from the narratives, Kenyan women living
with HIV/AIDS are deeply affected by stigma in their day-to-
day lives.
Several studies confirm that stigma and fear of being stig-
matized continue to affect HIV-positive Kenyan women. Like
their American counterparts, Kenyan women experience exis-
tential despair, shunning, and gossip (Buseh & Stevens, 2006).
However, Buseh and Stevens found that over time, American
women were able to overcome stigma and become community
leaders in educating others about HIV/AIDS. They were able to
reframe their experiences and move beyond stigma. This does
not seem to be the case with Kenyan women. Turan et al. (2008)
found that, similar to our study, Kenyan women experience fear
of shunning, fear of economic consequences, and fear of be-
ing labeled promiscuous. They find themselves placed firmly
in the heterotopic spaces outside the everyday life of their vil-
lage or community. The economic impact of being known to
be HIV-positive is tremendous. These women often lose their
livelihoods, whether it is selling food at the marketplace, acting
as day laborers, or doing domestic work. These women describe
being shunned and passed over (Mwaura, 2008). The people in
their villages fear the spread of HIV so much that the affected
women often have to travel to another region where no one
knows their status, just to live on the meager subsistence wages
they can earn.
Another area in which Kenyan women lose their status is
in community meetings. They are not allowed to participate as
active members, and thus, they are silenced in their communi-
ties. They are kept aside, not able to share the communal meal
because of others’ fears that the woman’s eating from the com-
munal dishes will lead to the spread of the disease. They are
not even allowed to act as greeters to the community for fear
they will spread the disease through simple contact like shaking
hands (Amuyunzu-Nyamongo et al., 2007; Turan et al., 2008).
According to Johnson (2006), these actions serve to make these
women second-class citizens and to keep them in their proper
heterotopia space, firmly outside the mainstream of society.
This allows the women to be abused by their families and their
156 P. M. KAKO AND R. DUBROSKY
communities. The women have little choice but to take the abuse
or move out on their own to large cities like Nairobi.
Finally, the women in the study described being labeled as
promiscuous or as adulterers. These claims serve to reinforce
the women’s outsider status. As they are labeled as abnormal,
they fall into the heterotopia of deviance described by Foucault
(1986). Thus, Kenyan women with HIV find themselves doubly
displaced by their illness. Their placement in the heterotopia of
deviance also serves to keep these women economically disad-
vantaged. Having been accused of cheating on their husbands
(though most women report the opposite), they are stripped of
their property, their homes are dismantled, and they are told to
return to their birth homes in order to receive help. However, the
label of deviant follows them, and their families often mistreat
the women, or in severe cases, they are run off and told to stay
away from their family for fear of bringing misfortune to the
family (Otieno, 2007).
Another important finding of the study is that despite the
pervasiveness of HIV-related stigma, women employ ways to
resist these socially constructed heterotopias. Women spoke of
how they resisted HIV-related stigma using multiple strategies.
Keeping their HIV status a secret until they felt comfortable
enough to engage in disclosure was important for some women.
Once women carefully disclosed their status, they felt relieved
of stigma. Miller and Rubin (2007) discovered that HIV-positive
people were more likely to make new friends through support
group networks. Miller and Rubin (2007) also found that indi-
rect disclosure and disclosure using an intermediary such as
a close family member reflects a Kenyan pattern of disclo-
sure closely associated with the communal nature of Kenyan
society.
A central finding from this study is that despite the fact that
women continue to withstand the worst of HIV-related stigma,
they maintain the capacity to resist the stigma in their day-to-day
lives. This struggle to cope with stigma amidst living with HIV
calls for continued efforts to end HIV-related stigma. The iden-
tification of social heterotopias is important because, with their
identification, efforts can be directed toward abolishing these
spaces by normalizing the HIV experience within the commu-
nity. In addition, the capacity of women to find creative strategies
of resisting HIV-related stigma must be supported and cultivated
for lasting HIV-related stigma eradication in the community. Lo-
cal grassroots mobilization that includes HIV-positive women
is needed at the community level.
IMPLICATIONS
This study has important implications for mental health
nursing practice in Kenya. The socio-cultural context of Kenyan
women requires that we design interventions that will address
the inequities women face. Many interventions against stigma
in the HIV/AIDS literature are directed toward individuals
rather than the community (Lekas, Siegel, & Schrimshaw,
2006; Parker & Aggleton, 2003). This type of individualized
intervention does not work well for the Kenyan women in
this study due to the communal nature of their culture (Miller
& Rubin, 2007). In order for us to develop interventions
that are appropriate to the situations of these women, the
interventions need to address the socio-cultural contexts in
which these women find themselves. They should address not
just the crisis of being diagnosed but also the crisis of being
labeled deviant by their communities. Interventions designed
to break this cycle would need to consider Kenyan women’s
already-underprivileged position with respect to the power
structures in their communities. Incorporating assessments of
HIV-related stigma and offering consistent guidance on how
to cope with stigma is critical to all HIV-related programming.
Health care workers, especially nurses, are well positioned to
routinely assess for stigma and its impact on women’s lives and
to offer locally appropriate guidance, including encouragement
for support groups or peer counseling and support as needed.
CONCLUSION
Our findings indicate that the marginalization of women liv-
ing with HIV continues to be pervasive and has important im-
plications in collective societies such as Kenya. By eliciting
women’s voices about their experience with stigma and how
they cope with it, we expected to amplify women’s ability to
resist locally prescribed stigma heterotopias and continue liv-
ing positively with HIV. Women poignantly resisted being la-
beled, and they questioned categorization by normalizing the
HIV experience and by refusing to be seen as different from
other people in their communities. Our findings highlight the
need for the continuous evaluation of HIV-related stigma in the
lives of women and the need to help women connect with com-
munity support groups and resources. Without talking to the
women, it is possible to assume that stigma and its effects have
decreased, as more focus is placed on scaling antiretroviral ac-
cess. Our article emphasizes the need to strategically integrate
stigma evaluation and intervention with HIV prevention, treat-
ment, care, and support. Health care providers and policymakers
need to evaluate these heterotopias spaces of otherness, evaluate
how women safely negotiate these spaces, and offer appropriate
interventions for dealing with HIV-related stigma.
Declaration of interest: The authors report no conflicts of
interest. The authors alone are responsible for the content and
writing of the paper.
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