Silence is not golden: invisible Latinas living with HIV in the Midwest.

Abstract

This qualitative study was conducted to better understand the health needs and concerns of immigrant HIV-infected Latinas residing in the Midwest United States. Individual interviews (n = 18) were conducted in Spanish with Latinas in Kansas, Oklahoma and Missouri. Women were at different stages of acceptance about their HIV diagnosis and four common themes emerged from the data: pregnancy as a death sentence, HIV is taboo, God as their only resource, and living in isolation. Silence was an over-arching theme present throughout all the narratives and many women had never shared their stories about HIV with anyone. Depressive symptoms and suicidal ideation were common. These findings have implications for strategies to address the HIV prevention and HIV-related healthcare needs of this population of women. Results from this study further suggest that efforts are needed to break the silence surrounding HIV and to reduce HIV-related stigma in smaller Midwestern Hispanic communities.

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ORIGINAL PAPER
Silence Is Not Golden: Invisible Latinas Living with HIV
in the Midwest
Maithe Enriquez•Patricia J. Kelly•Jacki Witt•
Liza Rodriguez•Nancy Lopez•Julie Smueles•
Teresa Romey•Donna Sweet
Published online: 9 May 2010
? The Author(s) 2010. This article is published with open access at Springerlink.com
Abstract
understand the health needs and concerns of immigrant
HIV-infected Latinas residing in the Midwest United
States. Individual interviews (n = 18) were conducted in
Spanish with Latinas in Kansas, Oklahoma and Missouri.
Women were at different stages of acceptance about their
HIV diagnosis and four common themes emerged from the
data: pregnancy as a death sentence, HIV is taboo, God as
their only resource, and living in isolation. Silence was an
over-arching theme present throughout all the narratives
and many women had never shared their stories about HIV
with anyone. Depressive symptoms and suicidal ideation
were common. These findings have implications for strat-
egies to address the HIV prevention and HIV-related
healthcare needs of this population of women. Results from
this study further suggest that efforts are needed to break
the silence surrounding HIV and to reduce HIV-related
stigma in smaller Midwestern Hispanic communities.
This qualitative study was conducted to better
Keywords
HIV ? Women ? Hispanic ? Immigrant
Introduction
There is no greater agony than bearing an untold
story inside you
Maya Angelou
Early in the HIV epidemic, the health care systems in
Western Europe and the United States tended to focus on
the needs of homosexual men [1]. The fact that women
were infected and affected by HIV has been only gradually
acknowledged. Moreover, recognition that this population
of women had special needs was even more slowly attained
[2]. In recent years the need for broad HIV prevention
measures across all populations has been acknowledged as
has an understanding that HIV-infected racial/ethnic and
gender groups have unique health needs that extend beyond
access to medical care and antiretroviral therapies.
Approximately 1.2 million people are living with HIV
(Human Immunodeficiency Virus) in the United States
(US) and over 56,000 new infections occur each year [3].
While there is no cure, HIV disease can be successfully
treated with antiretroviral medications and managed as a
chronic illness for many years [4, 5]. Racial and ethnic
minority populations experience disproportionately high
rates of HIV disease compared to Caucasians and also have
poorer HIV-related health outcomes [6].
The 44.3 million Hispanics/Latinos in the US now
represent the fastest growing group of Americans,
accounting for half the population increase between the
years 2000 and 2006 [7]. Hispanics/Latinos experience the
second highest rate of HIV infection among US racial/
ethnic minority groups [8]. Latinas, who are primarily
infected with HIV through heterosexual transmission,
experience worse HIV-related health outcomes than Latino
men and other minority females. Poor health outcomes and
M. Enriquez (&) ? P. J. Kelly ? J. Witt ? N. Lopez
School of Nursing, University of Missouri-Kansas City,
2426 Charlotte, 2406 Health Sciences Building, Kansas City,
MO 64108, USA
e-mail: enriquezm@umkc.edu
URL: www.umkc.edu/nursing
L. Rodriguez
University of Kansas Medical Center, 3901 Rainbow Boulevard,
Kansas City, KS 66160, USA
J. Smueles ? T. Romey ? D. Sweet
School of Medicine, University of Kansas-Wichita,
1010 N. Kansas, Wichita, KS 67214, USA
123
J Immigrant Minority Health (2010) 12:932–939
DOI 10.1007/s10903-010-9346-4

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lower survival rates among HIV-infected Latinas in the US
have been associated with delays in diagnosis and entry
into care and non-adherence to HIV treatment [9].
In the United States, Hispanics/Latinos have tradition-
ally lived in large cities throughout Florida, California,
Arizona and Texas. However, at the start of the twenty-first
century the number of Latinos living in the Midwest and in
smaller communities had risen substantially [10]. As the
Midwestern Latino population has grown, so has the
number of Latina women living with HIV. However,
little is known about the specific needs of Midwestern
HIV-infected Latinas [11].
Moreover, the antecedents to HIV infection and health
care needs of this group of Latinas may be unique, due to
immigration patterns and residence in smaller cities with
less diversity and fewer community resources. Few
research studies have focused on the needs of HIV-infected
Midwestern Latinas living in smaller cities—in part
because first-generation and recently arrived immigrants
have traditionally been a challenging study population to
reach [12, 13] and also because US HIV-related research
studies have typically been conducted in larger cities [14].
The initial aim of this qualitative study was to better
understand the healthcare needs and service gaps of a
population of immigrant Latinas living with HIV in Mis-
souri, Kansas and Oklahoma. We sought to gain informa-
tion that would help improve service delivery and inform
clinical practice. We expected to hear about health care
system problems such as long wait times to receive health
care services, financial barriers and difficulties surrounding
HIV treatment regimens. But we heard little about such
problems. In fact, all the women interviewed were satisfied
with their health care providers, had few if any negative
feelings about the health care system and indeed felt for-
tunate and grateful for the HIV care and treatment that each
was receiving. What we did find, however, was a group of
18 women who universally had been living in silence about
their HIV disease. ‘‘This is my ugly story,’’ they told us
over and over, ‘‘but it feels good to be able to tell it to
you.’’ Thus, while we found negative results in relation to
our initial hypotheses, an unanticipated outcome of this
study was to give voice to a group of Latinas who had been
underrepresented in previous HIV research. The emotional,
psychosocial and psychiatric needs discovered in this study
represent healthcare gaps for HIV infected women.
Methods
Narrative description was used in an effort to obtain a
better understanding of the antecedents to HIV infection
and the unique health needs and concerns of Latinas living
with HIV in the Midwest [15]. The analysis of narratives,
that is the examination of personal stories from the
populationofinterest,hasgained statureasaqualitymethod
for examining the human response to illness [16]. Narrative
description has been utilized successfully by researchers to
identify the health concerns of other populations of women
living with chronic illnesses [17] and is useful in practice
disciplines as a way to gain information about the desires of
those served from their own perspective [18].
Sample
Eighteen women from Missouri, Kansas and Oklahoma
participated in the study. The inclusion criteria for study
participation were age 18 years age and older, diagnosis of
HIV infection and Latina. Information about the study was
distributed to HIV-infected Latinas through case managers
in the Ryan White government-sponsored HIV case man-
agement program.
Establishing Research Relationships
Recruiting Latina women into research studies can be
challenging due to cultural and social issues such as tradi-
tional sexual roles and communication with male partners,
concerns about deportation, English language difficulties
and transportationproblems [19,20].Theestablishmentofa
trusting relationship between researchers, Ryan White case
managers and community agencies was the basis for suc-
cessful recruitment for this study. Prior to the study’s initi-
ation, the principal investigator met individually with case
managers in Oklahoma City, Oklahoma; Wichita, Kansas
and Kansas City, Missouri and visited their respective
community agencies several times over a 1-year period to
discuss the aims and long-term goals of the research study.
Afteritbecamecleartocasemanagersandagencypersonnel
that the goals of all parties involved were aligned, that is, to
learn more about the needs of Latinas in order to develop
effective ways to meet the needs of these women and their
families, enthusiasm for the study soared. The case man-
agers were anxious to ‘‘get the word out’’ to their Latina
clients that voluntary participation in this study was an
opportunity to ‘‘let their voices be heard,’’ and to express
their health care needs and concerns in a safe setting.
Procedures
The Institutional Review Boards of the University of
Missouri-Kansas City and the University of Kansas-
Wichita approved the study. The case managers informed
potential Latina participants about the study and offered
interested women two options for scheduling an interview.
Potential candidates could either contact the study nurse to
schedule an interview and the nurse interviewer would
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come to the woman’s home to conduct the interview, or the
participant could select a time and day to meet the nurse
interviewer at a local community agency. The majority of
women (n = 13) had their interviews conducted at a local
community agency; the remainder (n = 5) chose to have
the interviewer come to their homes. Women were
instructed to arrive at the local community agency on the
designated interview day and follow posted signs that
directed them to a conference room. These signs had no
identifiers as to the nature of the interviews. The nurse
interviewer did not have access to any contact information
or identifiers about the women prior to the interview date/
time. When a woman arrived at the conference room, a
research team member explained the study and obtained
written informed consent. The women each received a $25
department store gift card for their time participating in the
study. A light snack was provided and transportation
reimbursement was also available.
Each woman was informed that at the conclusion of the
interview she would be asked to sign the consent form
again to indicate that she was comfortable with the infor-
mation she had shared in the interview. If she was not
comfortable, she could stop the interview at any time, she
would be given the audiotape, and any information she had
shared up to that point would not be used in the research.
Each interview was audio-taped and lasted 50–75 min. All
participants signed the consent the second time as no
woman felt uncomfortable with the information she had
disclosed in the interview.
Data Collection
All interviews were conducted in Spanish by a bilingual/
bicultural masters prepared nurse with previous experience
in the care of adults with HIV disease. A demographic data
and health form was completed prior to the beginning of
the interview. Each interview began by asking the woman
‘‘what is it like being a Latina living with HIV in Okla-
homa, Kansas or Missouri?’’ and content flowed from the
responses. At some point in the interview, each woman was
specifically asked if she had any concerns about her health,
if her concerns were being addressed, and if her health
needs were being met. If a woman stated that particular
needs were not being met, she was asked to talk more about
each specific concern that she felt was not being addressed.
The interview concluded by asking the woman if there was
anything else she would like to say or if she had any advice
for other Latinas living with HIV. Saturation or repetition
of the same information became evident by the fourteenth
or fifteenth interview when it was apparent that no new
data was being collected. To ensure that data saturation had
been reached, three additional interviews were conducted
beyond the point at which no new data was being collected.
Data Analysis
The audio-taped interviews were transcribed verbatim in
Spanish and then translated and transcribed into English by
a certified bilingual Spanish/English interpreter. Charac-
teristics of voice inflection and emotion were added to the
transcriptions. Three investigators performed the data
analysis: two were bilingual/bicultural Spanish–English
and one was an English speaker. The investigator who
conducted the interviews did not participate in the data
analysis. Data were analyzed using content analysis [21] to
identify categories and themes that were discussed by the
women. Data were analyzed in both Spanish and English.
Analysis in both languages helped assure that no meaning
was lost or changed in the translation from Spanish to
English. The investigators coded the women’s responses
independently.Results, themes
emerged from the independent coding were reviewed and
any discrepancies in coding were discussed until 100%
agreement was reached among the investigators. The
majority of data analysis discrepancies involved issues of
translation and cultural language nuances that were chal-
lenging to capture in English. To enhance trustworthiness
of the data, two of the women who participated in the study
were asked to review an overall description of the findings
to be certain that they also agreed with the themes as
identified; their suggestions were integrated into the final
analysis.
andcategoriesthat
Results
The 18 Midwestern Latinas with HIV infection who par-
ticipated in this study were all first generation immigrants
whose dominant language was Spanish; many had limited
or no English proficiency (Table 1). The women ranged in
age from 26 to 55 and had an average of 9 years of edu-
cation. Half were married or lived with a male partner, half
were employed, and all but one had children living at
home. All of the women considered themselves to be in
good health and were actively engaged in HIV care and
treatment, with the majority (72%) taking antiretroviral
medications for their HIV disease, however, many (66%)
could not articulate their key HIV laboratory marker
numbers, CD4 cell count or their PCR/HIV viral load,
except to state that their ‘‘labs were good’’ or ‘‘my doctor
says I am doing fine.’’
The women willingly gave detailed descriptions of their
experiences as Latinas living with HIV in the Midwestern
US. Without prompting, almost every woman gave an
account of the day she was given her HIV diagnosis. The
majority of the women had learned about their HIV
infection through screening while pregnant, had little
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knowledge about HIV prior to their diagnosis, and had not
felt at risk for HIV prior to the diagnosis.
Four themes and two sub-themes emerged from the data
analysis (see Table 2), with silence as an over-arching
theme that prevailed throughout all the narratives. Every
woman expressed feelings of stigma and talked about
present or past barriers faced due to limited English pro-
ficiency. All spoke about feelings of depression, rejection
or suicidal attempts; few had received any type of mental
health care intervention. For over half of the women, God
was their primary source of emotional support.
Silence
Silence about their HIV infection dominated the actions of
the women in this study, who cloaked themselves in secrecy
about their illnesses. For most of the women, only a handful
of people knew about their HIV status, and in some cases
they had only talked with God about their diagnosis. Those
women who were married or partnered had told their hus-
band/partner, most often because the partner was also
HIV-infected. Only one woman had disclosed her HIV diag-
nosis to her children and few had told even close family
members.Infact,moststatedthatinformingfamilymembers,
in general those with whom they were closest on all other
issues,wasnotanoption,becauserelativesnotonlywouldnot
understand but also would reject the woman. Furthermore, it
was believed that an HIV diagnosis would pose too great a
burden for the family. Several had experienced severe
symptoms of depression or even suicidal ideation, yet had
spoken to no one, about these symptoms. In addition to this
silenceaboutHIVattheindividuallevel,manywomentalked
about the fact that HIV was not discussed in their families or
social networks. Most felt that they were ‘‘the only woman
living with HIV in (their) community,’’ and the majority had
never spoken with another woman who was HIV-infected.
Living a life of silence, filled with shame, stigma, and
depressive feelings in essentially complete isolation, had
become the ‘‘norm’’ for these women.
Pregnancy as a Death Sentence
Most women learned about their HIV diagnosis during
routine HIV screening while pregnant and described this
event as a ‘‘traumatic experience.’’
It is something one does not expect. I went in for
treatment of the flu and they told me I was pregnant.
They started doing a lot of laboratory tests which
showed I was infected with HIV.
Regardless of the circumstances surrounding the HIV
diagnosis, the news came as a shock for every woman and
most had immediate thoughts of death and dying.
When they tell you that you have HIV, this is an
experience one can never forget. I still remember in
Table 1 Demographic characteristics of participants (n = 18)
CharacteristicNo. (%)
Age
26–40 15 (83.3%)
41–55 3 (16.7%)
Marital status
Single/Divorced9 (50%)
Married/Lives with male partner9 (50%)
Employment status
Full-time8 (44.4%)
Part-time1 (5.6%)
Unemployed 9 (50%)
Taking ARV treatment
Yes13 (72.2%)
No3 (16.7%)
Did not respond2 (11.1%)
CD4 cell count
200–500
[500
Doesn’t know
4 (22.2%)
3 (16.7%)
12 (66.7%)
Did not respond 1 (5.6%)
HIV viral load
\50 (undetectable)
\5,000
Doesn’t know
4 (22.2%)
1 (5.6%)
12 (66.7%)
Did not respond1 (5.6%)
Have children living at home
Yes17 (94%)
No 1 (6%)
Number of children living at home
Range0–6
Mean 3.0
SD 1.5
Years of education
Range2–16
Mean9.81
SD 3.6
ARV antiretroviral
Table 2 Themes and
sub-themes
Silence
Pregnancy as a death sentence
HIV is taboo
God as the only resource
Living in isolation (two sub-
themes)
No one to talk to
Someone to talk to
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detail the face of the doctor that told me. When you
hear this diagnosis, you feel you don’t want to live,
the first thing you think is ‘I’m going to die,’ I’m
going to suffer a lot and die.
When I found out what I had (HIV), I tried to commit
suicide, do things I shouldn’t, I tried to commit sui-
cide twice.
One reason for the shock was that most women had
little, if any, accurate knowledge about HIV prior to being
informed about their diagnoses.
I didn’t know how people became (HIV) infected,
there are many myths…there is a lot of ignorance.
HIV is Taboo
Every woman talked about the constant stigma that sur-
rounded HIV and each of them was certain that family
members and friends believed that all HIV-infected indi-
viduals had done ‘‘bad things.’’ Hence, the women kept
their HIV diagnoses to themselves and feared rejection by
or social ostracism from their communities if the truth was
discovered. Women were concerned that their child(ren)
would be rejected at school and by friends if anyone
learned about her/her husband’s HIV diagnosis.
‘‘The (Hispanic/Latino) people accept all diseases
except this one. They (Hispanics) believe that people
with HIV are homosexuals or prostitutes. If I were to
tell anyone about my disease, they would say I had
been with everyone in the world.’’ ‘‘Latinos have a
closed mind about HIV, it’s taboo.’’
God as the Only Resource
Almost every woman talked about her relationship with
God, her dependence on God for guidance and her belief
that God would give her the strength to deal with HIV. For
some women, God was the only source of emotional
support.
I give thanks to God, He is the one who is helping me
be emotionally stable, I ask Him for this (through
prayer), that he not let the disease attack me, and I
think He is listening.
For me there have been two miracles (from God), I
am here, my daughter was born fine (not HIV-
infected) and up until now we are both fine…I have a
lot of faith.
Even the few women who had received professional
mental health services still felt that God was in control. In a
discussion about her recovery from alcohol addiction one
woman stated,
God lifted me up so that I entered a Christian reha-
bilitation program, my life changed and I stopped
drinking. I have been sober for one year.
Living in Isolation
No One to Talk to
Feelings of isolation resounded throughout the narratives,
with numerous vivid descriptions of loneliness and symp-
toms of untreated depression. For some, these feelings were
always present while for others the thoughts were inter-
mittent. Several women gave detailed accounts of past
suicidal ideations or suicide attempts.
I am alone in the world.
…I thought about killing myself, throwing myself in
front of a car on the road, I felt my life was not worth
anything and I felt like a parasite had entered my body
and was eating me… When I was diagnosed there was
no one to tell me ‘I have had this and I survived and
you can too.’ I touched bottom with this disease.
…Sometimes one has ugly thoughts….a desire to end
your life…I took a lot of pills while pregnant, then I
was sorry, but I’d already done it, thanks to God my
son is fine.
…I feel sad and alone, even though I have my family
and they know (about my HIV) but there is no other
person who has this disease except me…I would like
to talk with other women who have HIV.
Language barriers were an important factor that
heightened the experience of isolation. Every woman
described experiences in which the inability to speak,
understand, read or write English had caused distress for
her. Language barriers appeared to be more problematic for
women who were recently diagnosed, for those who had
little or no English proficiency, or both. Problems associ-
ated with limited English language ability ran the gamut
from simply not understanding instructions to not being
able to access needed health care services because of less
than competent translations.
…Yes, she (the counselor) spoke Spanish - but not
much. She did not help me and I felt like it was a
waste of time.
Women also talked about the challenges surrounding
their HIV care due to their inability to speak English,
despite the availability of interpreters.
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