Factors Affecting Healthcare Access for Older Immigrants: A Qualitative Study...
executive summary
1.
2. This study is funded by the AIDS United and represents collaboration among various
community-based organizations, community clinics, consumers and health advocates who are
committed to improving the quality of life of all Latinos in the South. We are grateful to their
collective wisdom and support of this community-based participatory research project.
Jesus Felizzola, MD
Principal Investigator
CommWealth Health, Inc.
For the full research report:
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INTRODUCTION
In recent years, the Centers for Disease Control and Prevention (CDC) have identified the Southeast
United States as a priority region in the fight against HIV/AIDS. The rates of new infections and the
spread of HIV have affected individuals living in mostly rural regions, but also minorities in large urban
areas of these states.
Latinos in the South are contracting HIV at rates disproportionate to their share of the population.
Moreover, they also have the highest percentage of new HIV cases than any other region in the
continental United States. Despite increasing attention directed to the South, important HIV/AIDS-
related needs remain.
The disparate care documented for Latinos is tied to poverty, discrimination, language barriers,
immigration status, and HIV-related stigma. While the situation has improved somewhat over time,
significant inequities persist.
AIDS United funded CommWell Health, a North Carolina-based Federally Qualified Health Center
(FQHC), to conduct a comprehensive assessment of HIV/AIDS needs and advocacy efforts on behalf of
Latinos living in nine Southern states, including Alabama, Arkansas, Northern Florida, Georgia, Louisiana,
Mississippi, North Carolina, South Carolina, and Tennessee.
The primary objectives of the project known as Latino Southern REACH (Research and Evaluation to
Build Advocacy Capacity in HIV/AIDS) were:
To describe the socio-cultural and policy barriers to HIV testing and treatment for Latinos living
in Southern states,
To identify local advocacy efforts in each of the nine states working to address issues impacting
access to HIV/AIDS testing, care and treatment.
One major goal of this study, beyond its basic findings, was to build a legacy of strong and committed
advocacy coalitions within the targeted states, and help raise awareness among existing organizations as
a means of mapping a pathway to change.
This report presents a summary of the comprehensive assessment of HIV/AIDS needs and advocacy
efforts on behalf of Latinos living in the South.
METHODOLOGY
The project adopted a community-based participatory research (CBPR) approach, which provides for an
equal partnership between traditionally trained experts and community stakeholders, who, along with
the researchers, participate fully in the investigation process. The project placed a heavy emphasis on
coalition-building, including involving key community “influencers,’’ mobilizing communities, and
ensuring that its members shared in decision-making in all phases of the project.
Using secondary data sources, researchers first assessed the status of the epidemic among Latinos in the
South, including demographics, HIV trends, health information and access to care in each of the nine
states. They then collected data from primary sources, using both quantitative and qualitative methods,
in order to identify HIV/AIDS needs and advocacy capacity.
Community coalition members and research team members extensively discussed the issues relevant to
HIV/AIDS and Latinos in the nine-state area, with an emphasis on assessing the state of the epidemic,
specific needs for the Latino HIV community, and the existing advocacy capacity. These included a
review of state and local HIV/AIDS data and reports; an analysis of existing quantitative and qualitative
data; and the development of preliminary findings and recommendations regarding the impact of
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HIV/AIDS on Latino populations in the South, and feasible ways to advocate and design programs for
them.
The Latino Southern REACH Coalition conducted a total of 85 interviews in the nine targeted states.
Study participants represented a wide range of individuals with a relationship to the Latino community
affected by HIV/AIDS. These included healthcare or social services providers (33%); consumers of HIV
services (21%); advocates or community organizers (16%); public service officials (11%); care givers,
family or friends of a Latino living with HIV/AIDS (6%); researchers or educators (2%); other members of
the community (7%.)
KEY BARRIERS FOR LATINOS TO ACCESS CARE SERVICES
Immigration Issues
Nearly 80% of the interviewees identified immigration issues the single most influential barrier
to care. Many undocumented individuals are unwilling to come forward because they are afraid
of revealing their immigration status. Even documented Latinos may choose to avoid exposure
to what is increasingly becoming a pervasive anti-immigration climate due to new state laws, or
attempts to enact them, as well as hostile rhetoric and behavior on the part of local law
enforcement officials, and others.
Homophobia and HIV/AIDS Stigma
Nearly 46% of the respondents identified homophobia and AIDS stigma their reason for
shunning the health system. The stigma associated with HIV/AIDS and homophobia may be
exacerbated by Latino cultural norms—the influence of family and religion, the taboo of sex, as
well as machismo may prevent Latinos from seeking care and support.
Lack of Transportation
About 47% of respondents said transportation problems prevented them from seeking care.
Lack of transportation discourages many from seeking even the most basic of medical services.
Cultural and Linguistic Competency Challenges
Roughly 61% named cultural and linguistic issues as a big factor preventing them from accessing
services. Even when treatment is available - and Latinos want it - a shortage or lack of culturally
competent and bilingual staff makes it difficult, if not impossible, to deliver health care to them
in a culturally appropriate manner and in their own language.
Not Having Health Insurance
About 61% of the respondents in the study said not having health insurance coverage
discouraged them from seeking care. Lack of health insurance, as it is among many groups
nationwide, also plays a role in accessing medical services.
HIV/AIDS NEEDS OF LATINOS IN THE SOUTH
Most of the deficiencies and needs are directly tied to lack of adequate funding.
Respondents identified the need for patient “navigators’’ and legal advisors who can help them
maneuver through the health system, as well as deal with immigration issues that may be
affecting access.
Information about HIV and HIV-related services in Spanish must become more widely available.
This is one of the best ways to ensure that members of the Latino community can make
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I think to have some kind of
patient navigator would be
excellent, in fact I wish there
was a whole fleet of patient
navigators, who were bilingual
in Spanish , well-versed in what
services are available, even
what the laws are regarding
HIV/AIDS, and how to follow-up
with treatment needs.
informed decisions about their risk for contracting HIV and where to obtain services if they test
positive.
There is scarcity of bilingual and bicultural staff and recruitment efforts are challenging.
…The [navigators] can be the ones who can go to our communities, and we
would see one of ourselves … being the one who tells us in a way that we
understand. – Health care or social services provider, Tennessee
The stigma associated with HIV, and homophobia, which may be exacerbated by Latino cultural
norms - the influence of family and religion, the taboo of sex, as well as machismo may prevent
Latinos from seeking care and support.
One population [AIDS service providers] has been
trying to reach…is Latino gay men. And that has
been super hard, because there’s a huge stigma in
the Latino community. They don’t want to talk
about it and they don’t want to get information or
anything like that. It’s the stigma of being gay and
being Latino. –Social services provider, North
Carolina
Immigration issues often are tied to HIV services. A
majority of respondents called for ways to help Latinos
living with HIV/AIDS solve their immigration problems so
they could access and comply with AIDS treatment
without fear of legal consequences.
If there isn’t an immigration reform, they won’t be able to implement the health
reform because a clause within the health reform…[states] that people have to
live as residents [of the U.S.] for five years to be able to access health
services…so if there isn’t an immigration reform…I think we are going to have
problems. (Translation) – Consumer of HIV services, Louisiana
KEY FINDINGS
Finding 1: No consistent advocacy exists that addresses the intersection of immigration laws and access
to HIV/AIDS testing, care, and treatment for Latinos. Therefore:
Community coalitions should develop outreach and engagement plans that work with the Latino
populations, community leaders, policymakers to develop, implement, and evaluate advocacy
efforts.
Resources should be identified for communities to evaluate and develop advocacy capacity on
behalf of Latinos that addresses the intersection between HIV and human rights in a culturally
appropriate manner. Latino communities must learn about their rights and how to advocate for
them.
Consumer and provider training and community dialogues can be coordinated to help bridge the
gap between Latino-serving organization and Latino populations and promote advocacy
resources and efforts.
Research initiatives should be expanded to assess and evaluate effectiveness of advocacy efforts
on behalf of Latinos in the South.
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Finding 2: The Latino population in the South is not a homogenous group. Therefore:
Advocacy strategies should be developed that take into account the growth of the Latino
population and demographic patterns within its sub-groups (acculturation level, linguistics
isolation, etc.)
Efforts to address health needs should consider the unique social, economic, and political
context of each of subpopulations within the Latino community.
Finding 3: Latinos in the South live mainly in rural areas characterized by social disenfranchisement,
poor transportation, poverty, lack of health insurance, and high level of alcohol use. Therefore:
Working groups can be organized across counties and states to share ideas and resources and
develop new approaches to reaching Latinos in isolated rural communities.
Identify resources to bringing health care services to Latinos in rural communities, rather than
expecting them to come to the clinics or other care sites. Among the strategies to make this
happen: (a) develop and train community residents to become lay-heath care first respondents;
(b) develop and train young health care providers to work in rural settings; and (c) train people
in the community to perform HIV testing and counseling, and to provide referral information for
HIV services.
Finding 4: The lack of or low levels of language and cultural competency among health providers and
staff at HIV/AIDS community-based organizations, health departments, and hospitals is a major barrier
to serving Latino populations in the South. Therefore:
Support efforts to improve linguistic and cultural competency among providers working or
needing to work with Latinos.
Establish programs that will help community-based organizations and health centers serving
Latino communities improve language and culturally appropriate HIV/AIDS testing, care, and
support services.
Finding 5: Latinos are uninformed about availability of services and misinformed about eligibility
requirements to access health care programs. Therefore:
Promote and support state and local initiatives to develop bilingual resource directories for
Latinos that will include information on agencies, programs, services, amenities – such as
transportation and child care – language capabilities, and documentation requirements for
publicly funded programs;
Develop and/or support Latino-specific social marketing initiatives that make health care
information available to Latino communities via trusted media sources and outlets.
Finding 6: Anti-immigrant sentiment and immigration laws likely contribute to the barriers that keep
Latinos from accessing care and treatment. Therefore:
Support mobilization efforts to educate diverse constituent groups about immigration policy,
and its impact on health and well-being of all Latinos through a social justice framework.
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CONCLUSION
In 2010, the U.S. Census documented more than 7 million Latinos in the nine-state Southern region,
accounting for 14% of the total U.S. Latino population. The needs and advocacy efforts in the nine
states are varied within the Latino community. This study represents a concerted effort to capture the
needs within the Southern states and serves as a catalyst for the development of a coalition that can
respond to the ongoing advocacy priorities of stakeholders and AIDS service organizations alike.
The 85 interviews that were conducted capture insights into the landscape of consumers, advocates,
and service providers and mark a necessary step for the ongoing work of the Southern REACH initiative
launched through support from the Ford Foundation and AIDS United. The insights capture some of the
nuances of daily life for people living with HIV/AIDS; the frustration of AIDS service providers managing
programs from a scarcity of resources; advocates who are battling anti-immigrant legislation and
bigotry; and the uncertainty of many about the impact of the Affordable Care Act.
We invite you to visit www.miamiaidsprojectinc.org to access a full copy of the research report.
Most people think ‘because I am undocumented, I might not be able to process or change my
immigration status in the future, if I go to a clinic and services are provided to me for free,
immigration is going to find out, and they are not going to grant me the immigration status I
desire because they will see me as someone who is coming to drain the system, who is coming to
be a taker,’ and Latinos are not used to being takers. So they choose not to get into services,
[thinking] ‘I need to legalize my status first’…you could explain the Ryan White program until the
cows come home, and they are still reluctant. Advocate/Community Organizer, Tennessee.