LET’S TALK ABOUT LUPUS/
HABLEMOS DEL LUPUS
Findings from the Community Panel
Discussions
National Alliance for Hispanic Health
1501 16th Street, NW, Washington, DC 20036
healthyamericas.org
TABLE OF CONTENTS
EXECUTIVE SUMMARY ........................................................................ 1
Overview .......................................................................................... 3
1. Program Background ...................................................................... 3
2. Goals and Objectives...................................................................... 4
3. Selection of Sites .......................................................................... 4
4. Selection Criteria of Participants ......................................................... 5
5. Characteristics of Participants in Consumer Panels ................................... 6
6. Characteristics of Participants in Providers Panels ................................... 7
7. Community Panel Discussion Findings ............................................... 10
SESSIONS WITH HISPANIC WOMEN/LATINAS ........................................ 11
Knowledge, Attitudes, and Behaviors of Hispanics about Lupus ..................... 11
Communication Platforms to Reach Hispanics with Information about Lupus...... 13
Developing Educational Materials and Testing Available Resources about Lupus for
Hispanics ...................................................................................... 15
SESSIONS WITH HEALTH CARE PROVIDERS ......................................... 18
The Experiences of Health Care Professionals when Diagnosing Lupus in Hispanic
Patients ........................................................................................ 18
Professionals’ Perceptions on Hispanic Knowledge Regarding Lupus .............. 20
Communication Platforms to Reach Hispanics .......................................... 22
Developing Messages/Testing Materials ................................................. 23
SUMMARY RECOMMENDATIONS......................................................... 26
Recommendations from Hispanic Consumers .......................................... 27
Recommendations from Health Care Providers......................................... 28
EXECUTIVE SUMMARY
In the United States an estimated 1.5 million people are affected by lupus, a
serious autoimmune disease that can affect body tissues and organs, and cause
significant morbidity and mortality. According to the Lupus Foundation of
America, women between 15 and 44 years of age comprise the majority of
people affected by lupus (90%).i The Foundation has also reported that although
lupus affects people from all races and ethnic groups, non-Hispanic black and
Hispanic/Latino women have a higher prevalence of the disease when compared
to non-Hispanic white women.ii Yet awareness of the condition including its signs,
symptoms, and the value of early diagnosis is not well known in Hispanic
communities.iii
To address these disparities, the National Alliance for Hispanic Health (the
Alliance) established the Let’s Talk About Lupus—Hablemos del lupus: National
Health Education Lupus Program in Hispanic Communities to focus on three key
areas: (1) increasing awareness of lupus and its signs and symptoms through
trusted national and community based organizations and leadership, (2)
improving access to services through one-to-one navigation, and (3) enhancing
quality of care by training professionals in culturally proficient strategies and
resources. The effort aims to reach at least 1.2 million Hispanics with a particular
focus on Hispanic women/Latinas between 15 and 44 years of age, a group
disproportionally affected by the disease, and train at least 300 health care
professionals.
To meet the goal of the initiative, the Alliance is working in with local,
national, public, and private organizations to expand program reach and access
to lupus resources, including The Lupus Foundation of America, Univision
Communications Inc., and the Ventanillas de Salud, the health windows in the 50
Mexican consulates in the U.S. Furthermore, a group of eight leading communitybased partners are coordinate efforts in each of the ten DHHS Regions to
disseminate resources to community members and regional partners as well as
professionals in the region. In addition, four partners worked with the Alliance to
conduct community panel discussions (CPDs) with Hispanic women/Latinas and
Let’s Talk About Lupus/Hablemos del Lupus
Community Panel Discussions: Summary Report
Grant #: 1CPIMP161121-01-00
1
health care professionals serving Hispanic communities. The CPDs with Hispanic
women/Latinas aimed to assess knowledge, attitudes, and behaviors with regard
to lupus disease, including information on preferred communication vehicles and
platforms to receive related information. The CPDs with health care professionals
aimed to assess health care provider needs to build and/or enhance skills in
lupus diagnosis and treatment, signs and symptoms recognition, treatment
protocols, and screening options.
Findings from the CPDs with Hispanic women/Latinas show that overall,
there is a lack of knowledge and misconceptions about lupus and/or its
symptoms. Participants believed that the best ways to provide health information
to Hispanics about lupus is through television, in person/face-to-face and
workshops/educational sessions with promotoras at the community level, radio,
and through brochures/pamphlets. Participants said that they themselves
preferred to receive the information in Spanish, but they also said that is was also
important to have it in English so their children could read it as well. They
recommended to develop an educational resource with basic information about
lupus that is colorful, clear and simple, in large print, with graphics and pictures of
Hispanic/Latino families.
Findings from CPDs with the health professionals reaffirmed the lack of
familiarity or understanding among Hispanic patients about lupus. They talked
about the many barriers Hispanic patients face when getting the appropriate
lupus diagnosis, including lack of language appropriate and culturally proficient
services, lack of health insurance that delays medical care, and the lack of
information about this condition, as well as misinformation and confusion with
other illnesses. In terms of the best ways to reach Hispanics with information
about lupus, providers mentioned health fairs, TV/radio, talks at community
centers/clinics, churches, and presentations at schools. In all groups, providers
agreed that educational materials for Hispanic patients should be in both English
and Spanish. In terms of making them aware of lupus resources they could refer
their patients to, providers said that email, webinars, and posters, are helpful
tools.
Let’s Talk About Lupus/Hablemos del Lupus
Community Panel Discussions: Summary Report
Grant #: 1CPIMP161121-01-00
2
OVERVIEW
1. Program Background
Hispanics are twice as likely as non-Hispanic whites to have lupus. Yet
awareness of the condition including its signs, symptoms, and the value of early
diagnosis is not well known in Hispanic communities.iv Compounding this
situation is the lack of access Hispanics have to services and the lack of
knowledge (cultural proficiency) of some health care professionals in how to
provide services to Hispanics.
To address these disparities, the National Alliance for Hispanic Health (the
Alliance) established the Let’s Talk About Lupus—Hablemos del lupus: National
Health Education Lupus Program in Hispanic Communities to increase Hispanic
community awareness and knowledge about lupus, connect individuals to
services in their community, and advance health care practitioners’ knowledge on
diagnosis and treatment to improve outcomes for those with lupus.
The Alliance designed this program to focus on three key areas identified in
the research to increase early diagnosis and improve the management of lupus.
These are: (1) increasing awareness and actionable knowledge; (2) support
navigating the health care system; and, (3) enhancing the quality of care. To
meet the goals of the initiative, the Let’s Talk About Lupus—Hablemos del lupus
effort is partnering with local, national, public, and private agencies to expand
program reach and access to lupus resources. Leading community-based
organization (CBO) partners will coordinate efforts to disseminate resources to
community members and partners as well as professionals in the region.
Key products will include a set of culturally proficient educational resources
on lupus for health care professionals, student trainees, and for underserved
Hispanic communities; a social media and traditional media lupus awareness
campaign in Spanish and English; one-to-one navigation services through the
Alliance’s bilingual Su Familia Helpline; and, culturally proficient training webinars
and resources on lupus for health care professionals serving Hispanic
communities. Development of products will be guided by an environmental scan
Let’s Talk About Lupus/Hablemos del Lupus
Community Panel Discussions: Summary Report
Grant #: 1CPIMP161121-01-00
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of available materials and resources on lupus, community panel discussions
(CPDs) on lupus with Hispanic women/Latinas15 to 44 years of age and health
care professionals in four communities, and key informant reviews. The CPDs
have four key elements: (1) implementation with community-based organizations;
(2) pilot tests to obtain feedback from communities representing different
Hispanic subgroups; (3) analyses of findings; and, (4) identification of promising
practices.
2. Goals and Objectives
The purpose of the Community Panel Discussions (CPDs) was to obtain
the opinions of Hispanic women/Latinas15 to 44 years of age and health care
professionals serving Hispanic communities. The CPDs with Hispanic
women/Latinas aimed to assess knowledge, attitudes, and behaviors with
respect to lupus, including information on preferred communication vehicles and
platforms to receive related information. The CPDs with health care professionals
aimed to assess health care provider needs to build and/or enhance skills in
lupus diagnosis and treatment, signs and symptoms recognition, treatment
protocols, and screening options.
The Alliance developed the, “Community Panel Discussions Protocol:
Guidelines for Site Coordinators and Moderators”, to ensure consistency in the
planning and implementation of the sessions at the community level. The
protocol included the following sections: Guidelines for Site Coordinators;
Guidelines for the Moderator (Consumer Session), in English and Spanish;
Guidelines for the Moderator (Health Care Providers Session) in English; and,
consent (in English and Spanish), exit surveys, and site summary forms for
participants and coordinators as attachments.
3. Selection of Sites
Four CBO partners were designated to conduct community panel
discussions (CPDs) at the local level to provide the essential qualitative
Let’s Talk About Lupus/Hablemos del Lupus
Community Panel Discussions: Summary Report
Grant #: 1CPIMP161121-01-00
4
information to inform the proposed work of Let’s Talk About Lupus—Hablemos
del lupus program. These lead agencies were selected to ensure adequate
representation of Hispanics in different areas of the country and to elicit
information from diverse Hispanic subgroups. The agencies were as follows:
Hispanic Federation in New York, NY; Día de la Mujer Latina in Houston, TX;
Family Health Centers of San Diego in San Diego, CA; and, Chicago Hispanic
Health Coalition in Chicago, IL. The program coordinators at each of the
agencies worked with the Alliance to plan the sessions and were charged with
recruiting the Hispanic women/Latinas and healthcare professionals who
participated in the CPDs.
4. Selection Criteria of Participants
Consumer panels consisted of 10-12 Hispanic women/Latinas 15 to 44 years of
age who self-identified as Hispanic/Latino and were:
•
At least 15 years of age;
•
Represented different income and education levels;
•
Represented individuals from different Hispanic/Latino origins; and,
•
Represented a mixture of Hispanic/Latino individuals born in the United
States and those not born in the U.S.
Provider panels consisted of at least 8-10 health care professionals who provide
services to Hispanics and were:
•
Primary care professionals (general practitioner, family medicine, and internal
medicine);
•
Physician Assistants, Nurses Practitioners, Nurses (primary care,
dermatology); and,
•
At least ONE of the following specialists: Rheumatologist and/or
dermatologist.
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Community Panel Discussions: Summary Report
Grant #: 1CPIMP161121-01-00
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5. Characteristics of Participants in Consumer Panels
Country of Origin of Consumer Participants
Argentina
1%
Costa
Rica
2%
Honduras
2%
El Salvador
2%
Dominican
Republic
1%
Countries of Origin
of Consumer Participants
USA
10%
Venezuela
5%
Ecuador
3%
Colombia
3%
Mexico
71%
Consumer Participants’ Profile
CONSUMER PARTICIPANTS’ PROFILE
Sites
Age
Range
Language Used at Home
Average Years
in the US
CHHC
23-56
•
•
76% Spanish & English
24% Spanish only
20
DML
22-59
•
•
50% Spanish & English
50% Spanish only
21
FHCSD
27-58
•
•
44% Spanish & English
56% Spanish only
21
HF
19-45
•
•
64% Spanish & English
36% Spanish only
20
Let’s Talk About Lupus/Hablemos del Lupus
Community Panel Discussions: Summary Report
Grant #: 1CPIMP161121-01-00
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Consumer Participants’ Opinions on the Best Ways to Reach Hispanic
Communities with Lupus Information
Consumer Participants' Opinions on the
Best Ways to Reach Hispanics
with Lupus Information
45
40
35
30
25
20
15
10
5
0
43
22
16
22
20
26
29
15
10
7
1
0
6. Characteristics of Participants in Providers Panels
Health Care Providers’ Profile
HEALTH CARE PROVIDERS’ PROFILE
Gender
ALL SITES
Hispanic/Latino
Origin
Spanish Fluency
83%
86%
74% Females
26% Males
Let’s Talk About Lupus/Hablemos del Lupus
Community Panel Discussions: Summary Report
Grant #: 1CPIMP161121-01-00
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Health Professions of Provider Participants
Providers’ Opinions Regarding the Problems that Affect
the Care of Hispanics with Lupus
Severity of Problem* in the Care of
Hispanics with Lupus
40
Ability to Refer to Specialists
54
Awareness of Resources
30
Ablility to Speak Spanish
37
Lack of Time
0
20
40
60
* Provider participants gave scores from 1-5 to indicate severity of the problem in the care of Hispanics with
lupus
Let’s Talk About Lupus/Hablemos del Lupus
Community Panel Discussions: Summary Report
Grant #: 1CPIMP161121-01-00
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Provider Participants’ Opinions on the Best Ways to Reach Hispanic
Communities with Lupus Information
20
Providers' Opinions on Best Ways to
Provide Hispanic Patients with Lupus
Information
20
13
15
13
11
10
5
7
8
9
9
6
3
3
1
1
0
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Community Panel Discussions: Summary Report
Grant #: 1CPIMP161121-01-00
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Providers’ Opinions on Their Needs to Help Care for Hispanics with Lupus
1. Information
2. Easily Understandable Information
3. Information and Learn/Communicate with Others
4. Education
5. Nurse Educator Available
6. Referral Resources
7. Specialists for Uninsured and Financial Help for
Medicines
8. Lupus Education and Emphasis on Family History
9. Resources to Share with Patients
10. Resources and Education
11. Access to Specialists and Information for Patients
12. Materials
13. More Information
14. Funds for Education/Awareness
15. Specialists for Uninsured and Financial Help for
Medicines
16. Resources Designed for Latino Community
17. Resources to Share with Patients
18. Resources
19. Referrals to Specialists that Speak Spanish to
Fully Understand Disease
20. Time
21. Resources
22. Early Awareness Education for General Population
23. Appropriate Information
24. Interdisciplinary Team
25. Personal Relationships with Patients
26. Involve Educators in School System
7. Community Panel Discussion Findings
The following is a summary description of the findings from the community
panel discussions (CPDs) on lupus, that were conducted at the local level with
Let’s Talk About Lupus/Hablemos del Lupus
Community Panel Discussions: Summary Report
Grant #: 1CPIMP161121-01-00
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Hispanic women and health care providers at four community-based program
sites. This summary provides highlights of the collective and some individual
thoughts and opinions about lupus that were shared during the CPDs
participants. A selection of quotes taken from the discussions are presented (and
translated into English) as a complement to the summary of findings and to
provide a sense of the tone of the discussions. In addition, a series of specific
recommendations for the development of educational materials on lupus made
by the women participants and the health care providers are also provided.
SESSIONS WITH HISPANIC WOMEN/LATINAS
Knowledge, Attitudes, and Behaviors of Hispanics about Lupus
This section of the CPD was designed to gather information on what
participants knew about lupus, the cultural themes that could influence their
perceptions and understanding of this condition, and any experiences with family
members or friends with lupus.
In general, some participants in all groups said that they have heard about
lupus but they did not know much about the condition or its symptoms. In one
group, most of the participants had attended a talk on lupus so they were more
familiar with the topic. A few participants said they knew someone or knew of
someone who suffered from lupus. They mentioned celebrities like Selena
Gomez, Talia, and Tony Braxton. One participant shared that she had been
diagnosed with the disease but it took her many years to get the right diagnosis.
Additionally, some participants in all groups said they never heard of it.
When asked specifics of what they have heard about what lupus was,
participants said they heard it was a serious disease and without a cure; some
said it was like cancer; and, a couple of the participants said they thought it was
transmitted sexually. When asked if they knew what causes lupus, the majority
said they did not know. A few participants mentioned heredity/genetics, stress,
nervous system,
Regarding the symptoms of lupus, these are some of the symptoms that
were mentioned by the participants who were more familiar with the condition:
pain, body ache, fatigue, inflammation, skin rashes (including the butterfly
Let’s Talk About Lupus/Hablemos del Lupus
Community Panel Discussions: Summary Report
Grant #: 1CPIMP161121-01-00
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shaped rash on the face), fever, joint pain, and eye irritation. When asked about
diagnosis, the majority of the participants said they did not know how lupus is
diagnosed but a few mentioned blood tests. When asked about the treatment for
lupus, the participant who knew someone with lupus said that the person was
taken to the hospital, given medicines and/or pills, creams, and had to follow a
diet.
Participants were also asked what kind of things they thought were
important to managing the condition, and their responses included: natural or
homeopathic medicine; learn how to reduce stress; good nutrition; sleep;
exercise; prevent inflammation;
“En mi caso he escuchado el nombre,
pero la verdad no tengo información de
lo que es la enfermedad” (In my case, I
have heard the name but truthfully, I
have no knowledge about this disease).
being followed by a health care
“Yo escuché esa palabra hace como
unos 25 años. Mi abuelita se
enfermó…estaba en cama y no se podía
mover. Tenía llagas dentro de su cuerpo
y por fuera. Le dijeron que era lupus” (I
heard that word about 25 years ago. My
grandmother was sick…She was
bedridden. She had lesions inside and
outside of her body. She was told it was
lupus).
they or a relative were
“Anteriormente yo pensaba que lupus
era relacionado con cáncer” (Before I
used to think that lupus was related to
cancer).
educational materials. When
provider and/or a specialist like
a rheumatologist; and, eye
exams. In terms of support if
diagnosed with lupus, all the
groups believe that the
family/significant other were the
most important sources of
support, followed by friends,
churches, spirituality, and
asked about what type of
community resources for lupus
would be important to have
available in their area, all participants said that it was
important to have community centers to provide information;
support groups/workshops on nutrition and stress reduction; access to clinical
and preventive services, check-ups, and discounts for medicines; and, programs
with promotoras.
Let’s Talk About Lupus/Hablemos del Lupus
Community Panel Discussions: Summary Report
Grant #: 1CPIMP161121-01-00
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When asked if anyone had previously discussed specifics regarding their
immune system, any autoimmune diseases, or if they knew anyone with an
autoimmune disease, some said that the immune system helps fight diseases,
and that the immune system are the white cells that defend the body from
disease. Some participants mentioned psoriasis as an example of an
autoimmune disease and that autoimmune diseases are conditions were caused
by the body itself.
Communication Platforms to Reach Hispanics with Information about
Lupus
This section of the CPD intended to obtain participants’ opinions on
preferred platforms for reaching Hispanics and delivering educational materials
on lupus, and gaining access to available resources within the community.
Most participants in all groups stated that they access health information
at the doctor’s office, clinics, and through the Internet using Google and Yahoo.
There were participants who were specific about the sites they use to obtain
health information such as WebMD and Dr. Oz, and some went even further
stating that they are aware that not all health information that comes from the
Internet is reliable. Other sources of health information mentioned were health
fairs, promotoras programs, pamphlets, brochures, community agencies, and a
few participants mentioned schools and churches. In terms of language
preference, the majority of participants said that they themselves preferred the
information in Spanish, but they also said that is was also important to have it in
English so their children could read it as well. Participants believed that the best
ways to provide health information to Hispanics is through television, in
person/face-to-face and workshops/educational sessions with promotoras at the
community level, radio, and through brochures/pamphlets. They also mentioned
that health fairs, churches, and bus stops are also good ways to outreach to
Hispanic communities with health information. Once again, participants said that
the language should be Spanish since for many Hispanics, health information
would be easier to understand if it is delivered in their first language.
Let’s Talk About Lupus/Hablemos del Lupus
Community Panel Discussions: Summary Report
Grant #: 1CPIMP161121-01-00
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Nevertheless, for younger generations, information would also be useful in
English.
Given a variety of options for receiving information, i.e., TV, Radio, printed
material, face-to face, Internet, email, text messaging, and/or social media, in
person or face-to face was the preferred way to receive health information.
Participants also stated that printed materials like pamphlets, brochures,
postcards, are preferable sources of health information as they can be taken
home to read and share with friends and relatives, and are useful for those who
do not have Internet access. Some participants added that materials that include
a phone number may motivate people to call for more information. TV and radio
are also trusted sources of health information, more so in Spanish. TV and radio
programs help to spark interest in health topics and motivate people to look for
more information and talk about health issues. Participants mentioned TV
programs such as Discovery Channel, Despierta América, and Dr. OZ, and radio
programs such as Conversando con la comunidad amongst others. According to
participants, individuals can listen to TV and radio programs while they do other
tasks/chores. In addition, some programs can even be recorded. Email, Internet
and social media were the least preferred methods of receiving health
information even though most people had a Facebook page. Some sited concern
over the reliability of
“En la comunidad es importante tener los grupos
de apoyo” (In the community it is important to have
support groups).
“Talleres de apoyo sobre la enfermedad y talleres
de apoyo sobre la dieta” (Support groups and
workshops about the diet).
“Cien por ciento los talleres” (Workshops 100%).
health information
and the sources of
health information
found on the Internet
and through social
media sites.
“La televisión, la radio y los medios de
comunicación” (Television, radio, and the media).
“La radio, muchas personas escuchan la radio”
(Radio, many people listen to the radio).
Let’s Talk About Lupus/Hablemos del Lupus
Community Panel Discussions: Summary Report
Grant #: 1CPIMP161121-01-00
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Developing Educational Materials and Testing Available Resources about
Lupus for Hispanics
This section of the CPD obtained participant’s opinions concerning
appropriate content, format, language, and design of an educational resource on
lupus to be developed by the Alliance. This section of the discussion also
included getting feedback on some existing consumer resources on lupus.
Participants were asked about useful and practical information that should
be included when designing educational materials for Hispanic consumers about
lupus. The overwhelming response among participants was to develop a small,
short, and colorful brochure/fact-sheet with basic information about lupus that
includes pictures of Hispanic/Latino families. The groups were very specific in
terms of the format. They insisted that the information provided be clear, simple,
concise, and straightforward information that explains the basic facts about
lupus. Additionally, they stated that the print should be large and the resource
should include pictures and drawings. Taking into consideration that some
members of the community do not know how to read, participants also
recommended the use of pictures and images associated with lupus, or that
represent the information being provided, for example when talking about the
symptoms the image should depict the symptom.
Regarding content, participants recommended including the definition of
lupus, its symptoms, causes, prevention and treatment. This information should
be provided in a way that encourages people to learn more. This educational
brochure/fact-sheet should be developed in a bilingual format, side by side in
English and Spanish. Participants also recommended including a phone number
of a helpline (in Spanish), where consumers could call for more information. In
addition, some participants suggested developing a mailing postcard that
contains basic information about lupus, similarly to the postcards distributed to
Hispanic consumers by the Alliance’s Buena Salud Club.
Participants were asked about the best ways to convey messages to
Hispanic communities on the importance of becoming familiar with the signs and
symptoms of lupus and how to urge individuals to see a health care provider to
Let’s Talk About Lupus/Hablemos del Lupus
Community Panel Discussions: Summary Report
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get a diagnosis. The participants
“En el folleto, yo pondría una
familia, porque si a ti te afecta la
enfermedad tú siempre piensas
en tus hijos y acudes más rápido
al médico” (On the pamphlet, I
would use a family. Because if
the disease affects you, you
always think about your children
and get an appointment with the
doctor quickly).
mentioned using similar messaging
“Esta información debería ser
muy importante y dársela a las
personas en general, de la
misma manera que se está
haciendo con el cáncer de
mama” (This information should
be very important and should be
given to the people in general,
the same way it is being done
with breast cancer).
providers add lupus to the list of
“Hacer publicidad como están
haciendo con el cáncer de seno”
(Publicity/promotion as they do
with breast cancer).
community, to learn about ways to
“Yo pienso que es muy
importante dar más educación
sobre esta enfermedad, porque
uno tiene hijas y tiene hijos que
van a llegar a cierta edad…para
transmitirles ese conocimiento
para la prevención” (I think it is
important to provide more
education about this disease,
because one has daughters and
sons who will get to a certain
age…to transmit this knowledge
for prevention).
to, provide the information during local
campaigns used by other diseases
such as cancer (breast and cervical),
HIV, and to campaigns recommending
women get their mammograms or the
HPV vaccine. Also, participants
recommended that health care
conditions or diseases they ask about
during routine check-ups or physicals.
Participants suggested
informing those diagnosed with lupus
to work with groups of promotoras,
who are trusted members of the
manage their condition to have a
better quality of life. Another idea was
health fairs and community events;
and, organize support groups and
workshops in the community about
lupus.
At the end of the discussion,
participants were asked to review the
available materials on lupus
developed by the Lupus Foundation of
America and the American College of
Rheumatology. Sample copies of various
educational materials were distributed among the participants.
Participants were given a set of booklets and fact sheets about
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lupus, some of which were in Spanish. They were given 15–20 minutes to review
the materials before they were asked to provide feedback.
When asked if they had ever seen the materials, across all groups no one
had previously seen the materials. In all groups the participants agreed that the
colors used in these publications were “sad colors”. Interestingly enough,
participants at all the sessions used the same expression in Spanish: colores
tristes. They were also unanimous about the materials containing too much
information, it would take them too long to read; information was too dense or
heavy, albeit important; the size of the print was too small; and, materials needed
more pictures to make them more appealing and thus motivate people to read
them. Some participants liked the size of the booklets but they restated that the
booklets should contain simpler, easy-to“Un folleto vistoso, en los dos
idiomas” (A colorful pamphlet, in
the two languages).
read information.
Participants were also provided
a one-pager on lupus in English from a
“Un folleto que tuviera pocas
letras, más conciso” (A pamphlet
with less text, more concise).
tear-pad and were asked for their
feedback. All participants were
“Un folleto más práctico, que la
persona no piense que la estás
llenando de información y le dé
flojera leerlo” (A more practical
pamphlet, so the person would
not think you are saturating
him/her with information and
would not feel like reading it.
overwhelmingly positive about this tool
“Colores vedes subidos,
naranja, colores más
intensos…con un diseño con
caras alegres sonrientes” (Bright
green colors, orange, intense
colors…with a design that
includes happy faces smiling).
representing the human body, and the
and agreed that a Spanish version
would be a great educational material
for Hispanics. They thought this tool
was more appealing and they said they
liked the colors, the graphic
conciseness of the information. Some
participants said that this tool may be
more effective with younger Hispanics.
Another resource that received a
positive response from most participants
was the Spanish version of the booklet to help the
dialogue between the patient and the provider about lupus.
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Particularly, the participants said that including a table where patients could write
down information about the symptoms and about the medicines they take, would
be useful. According to them, they liked this material because it was short and
the information was concise and easy to follow. They said they would add couple
of pictures to the booklet but the overall feedback was positive.
SESSIONS WITH HEALTH CARE PROVIDERS
All of the lead CBO partners experienced some difficulties in recruiting
physicians, particularly specialists in rheumatology and dermatology, to
participate in the lupus community panel discussions. Most sites were successful
in recruiting a good representation of other health care providers from varied
health professions serving Hispanic communities in the four target cities. Some
providers who participated in the sessions had not encountered patients with a
suspected lupus symptomatology or diagnosis. Nevertheless, these providers
provided important feedback in terms of their experiences, as well as the cultural
aspects of the Hispanic population they serve in regards to some of their beliefs
and the communication platforms to best reach them with information about
lupus.
The Experiences of Health Care Professionals when Diagnosing Lupus in
Hispanic Patients
This section was designed to obtain the experiences of health care
professionals when diagnosing Hispanic patients with lupus and their thoughts on
what information and resources would be helpful. Additionally, information
gathered in this section would benefit the Alliance in the development of
webinars targeted to Hispanic serving health care professionals.
When health care providers were asked about the information that would
be most helpful to them to better diagnose lupus, providers in all groups stated
that having more information on what the disease is and especially information
about the symptoms, would be most helpful. Among those providers who had
experience with patients with a suspected lupus diagnosis and were not
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rheumatologists, they all said that they do an initial assessment including family
history and symptoms, followed by diagnostic tests. Based on criteria and clinical
suspicion they proceed to refer to the patient to a specialist. All participant
providers agreed that being able to speak Spanish improves the ability to discuss
issues with their Hispanic patients. Moreover, when the person says that
“When we speak Spanish, they feel
comfortable with us.”
“El problema es cuánto tiempo le toma
al paciente ver a un reumatólogo y ver
el reumatólogo que está cerca, habla
español, y le convenga más en
términos de localización” (The problem
is the time it takes the patient to see a
rheumatologist, and see the
rheumatologist who is nearby, speaks
Spanish, and is more convenient in
terms of location).
“The barrier is insurance. People who
do not have insurance…”
“Foreign born women I feel, are the
ones that have the greatest difficulties
in being advocates from themselves.”
“For me is whether or not the diagnostic
tests are feasible for the patients. Like
the cost of the diagnostic test.”
“Something that we see commonly, just
as a plain obstacle is a referral to a
specialist.”
“There are big obstacles for a lot of our
patients to get from here to there. And
very often they don’t get the
appointment, usually for insurance or
economic reasons. Sometimes because
of their heavy work schedule.”
everything is fine, the ability to
speak the language allows them
to ask the questions in different
ways to elicit a more detailed
response. Among the few
participants who did not speak
Spanish, they said that to
communicate with patients who
only speak Spanish, they prefer
to use an interpreter but when
he/she is not available, they use
phone translation services.
In all groups, health care
providers talked about the
language issue as one of the
many barriers Hispanic patients
face when getting the
appropriate diagnosis. In relation
to lupus, providers at one of the
sessions mentioned that in their
serving area there are very few
rheumatologists that speak
Spanish. Other barriers that
were mentioned throughout the
discussions were: the lack of health
insurance that delays medical care, and the lack of information
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about this condition, as well as misinformation and confusion with other illnesses.
Professionals’ Perceptions on Hispanic Knowledge Regarding Lupus
This section of the CPD documented the perceptions that health care
professionals have concerning the knowledge and cultural aspects that help
Hispanics make decisions regarding a lupus diagnosis and management of the
disease.
Providers in all community panel sessions were unanimous in their
response to the lack of familiarity or understanding among Hispanic patients
about lupus. Providers mentioned that when a patient has a personal connection,
such as knowing someone who suffers from lupus, they tend to be more familiar
with the disease. Health providers indicated that one misconception among some
patients is that lupus is a type of cancer and they believe that they will die from it.
Additionally, health professionals stated that some patients associate the disease
with leprosy, or patients think lupus is a bone disease, or they do not know if it is
contagious. Some patients also rely on incorrect information they receive from
their friends and relatives.
When providers were asked, what should patients know when going to
their health care provider for diagnosis, they spoke about the patient becoming
more familiar with the disease and the symptoms, and asking about the
treatment and management. Provider participants agreed that the people and
sources Hispanic patients consider trustworthy are health care providers, family,
educators, churches, and some even mentioned TV and telenovela personalities.
They usually trust the people that speak their language and the experiences of
their relatives.
Health providers shared some of the questions they receive from Hispanic
patients diagnosed with lupus. Among the questions patients ask are: what is
the prognosis and life span of the condition; what is the impact on kidneys and
will they will need to go on dialysis; is there a cure and is the disease hereditary;
and, is this a cancer and is it fatal. Health providers also stated that they
experienced Hispanic patients: who do not think it is serious and if the patient
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feels fine, the patient does not see the need to visit the provider; who think they
will just need a pill; and, who ask about the cost of the treatment.
Amongst the attitudes of Hispanics that concern health providers are
issues such as: patients not taking their medicines as prescribed, not completing
the treatment course, or dislike taking pills; some patients that do not take the
diagnosis seriously and look for alternative or natural therapies; some patients
that go back to their countries of origin for a second opinion or to bring back
medicines; and, patients who do not discuss their family history. Families in
certain instances can become obstacles for the patient during the health decision
making process. At the same time, family support was considered helpful
amongst the attitudes of Hispanics that health providers considered positive.
“I remember someone telling me it was bone disease.”
“It only affects the skin…” “You can catch it.”
“I think there is pretty low awareness in general.”
“Entre los hispanos, si no tengo el problema en mi casa no me afecta”
(Among Hispanics, if I don’t have the problem at home, it does not affect
me).
“If it [lupus] has touched their life, a family member or a friend, otherwise
there is no connection.”
“Hispanics trust experiences of other family members.”
“Family dynamics sometimes get a little tricky…Don’t tell my mom she is
as sick as she is. A lot of interplay that is not helpful.”
“El paciente usualmente va a su país de orígen y trae medicinas de allá
que no serían indicadas” (The patient usually goes back to his/her
country of origin and brings back medicines that would not be indicated).
“I see many patients that come here and get a diagnosis. Many of them
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Communication Platforms to Reach Hispanics
This section of the CPD focused on which communication platforms
clinicians believe are preferred among Hispanics, who should provide the
messages and what language they feel is more appropriate to use.
When health care providers participating in the discussions were asked if
they were aware of educational materials, community resources, or programs for
lupus, that they could share with their Hispanic patients, one provider mentioned
he used information from the Arthritis Foundation. A few others mentioned that
they knew about the Lupus Foundation and the American College of
Rheumatology, but did not say they used their resources with their patients. All
groups agreed that the written information should be provided in both English
and Spanish to Hispanic patients. One group of providers indicated that if the
information was provided orally, the preferred language should be Spanish. They
added that some patients do not respond well to materials as they find them
impersonal. They indicated that the materials should be a complement to the
discussion they have with the provider. Provider participants said that email,
webinars, and posters, are helpful tools to make them aware of lupus resources
they could refer their patients to. When asked how should the program provide
lupus information to Hispanics, all groups mentioned health fairs, TV/radio (for
example novelas), talks at community centers/clinics, churches, and flyers and
presentations at schools. Other suggestions included signs at metro/subway and
bus stations, at supermarkets and at the malls, through the Ventanillas de Salud
program at the consulates, and campaigns during lupus awareness month.
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Developing Messages/Testing Materials
This section of the CPD asked for the opinions of providers about the
content, appearance, and readability
“A good portion of the patient
population we see here, their literacy
levels are very low. Even simple
conditions are difficult to explain for
them to understand. So, if you add
lupus which is a more complex
diagnosis and management…so
having a lupus educator would help
patients understand.”
that educational materials on
lupus targeting Hispanics should
have and to get their feedback on
existing materials.
The main message that the
majority of participant providers
said to include in lupus related
“Sin competir con los médicos y las
enfermeras, están las promotoras de
salud. Ellas navegan a la gente que
necesita más allá del apoyo, ya que
tienen muchos problemas. La gente no
simplemente piensa en la salud”
(Without competing with the physicians
and nurses, there are the
“promotoras”. They navigate the
people beyond the support because
they have lots of problems. The people
not only thinks about health).
materials for Hispanics was
“Utilizar las enfermeras para que
hagan más educación con los
pacientes” (Utilize the nurses to
conduct more education with the
patients).
this disease can be managed.
“Clases de educación en la
comunidad” (Community education
sessions/workshops).
as well as for the provider
“I think they trust health care providers,
the family, teachers and even some
TV programs.”
information describing what lupus
is, the symptoms, treatment, what
to expect, and management.
Particularly important was the
need to emphasize the
importance of follow-up with their
health provider and the fact that
When asked, what should be
included in a toolkit that could be
useful and practical for the patient
following the progression of the
disease, participants
recommended to include: a
checklist of symptoms, labs, and
even daily activities; a medicines log
where patients can record side effects;
information on what to expect as the disease progresses; a
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chart to record the contact information of their health care providers; and,
appointment cards. A CD/DVD highlighting a patient’s experience with lupus and
a lupus app were also mentioned.
Providers were asked about what methods would best convey the
message of the importance of early diagnosis and among the responses there
was the suggestion to use TV and a lupus patient as a spokesperson to raise
awareness. Additionally, health provider participants were asked how they
usually recommend educational materials on lupus to patients when asked by
their patients and only one group of health providers mentioned that they would
refer patients to the Lupus Foundation.
Before the end of the session, participant providers were asked to conduct
a brief review of available materials on lupus developed by the Lupus Foundation
of America and the American College of Rheumatology. Sample copies of
various educational and resource materials were distributed among the provider
participants. They were given 10–15 minutes to review these materials before
they were asked to provide feedback. In all communities, the providers said they
had not previously viewed these materials/resources on lupus. The consensus
among all providers was that the series of booklets about lupus had too much
information, and some even mentioned it was overwhelming, even though the
information was good. The majority of providers did not think Hispanics could
relate to these booklets and they said that they needed to be in Spanish and with
pictures more representative of the community. In terms of the layout, format,
and the color design of the booklets, providers indicated that the size of the text
was too small, the colors needed to be more vibrant, and that they needed more
pictures and/or images to make them more appealing to their patients and
Hispanic communities in general.
Participant providers were also given copies of the accompanying fact
sheets to the lupus booklets for their review. These fact sheets received more
positive feedback from the providers in all groups. The fact that they were
available in Spanish and that they had less content than the booklets was
favorable. Nonetheless, providers pointed out that the fact sheets should be even
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shorter, more pictographic and representative of the community being targeted.
They did not find the text either easy to read or simple enough to understand for
some of their patient population, especially for those patients with lower literacy
levels. They also indicated that the format should be smaller in size and the
design should be more colorful and brighter to make them more attractive and
motivate people to grab them. Nevertheless, providers said they would give
these materials on lupus to their patients.
Providers were also given copies of the one-pager on lupus in English from
a tear-pad and were asked for their feedback just as was done in the Hispanic
consumer sessions. All health provider participants were very enthusiastic with
positive feedback about this tool. They also agreed that a Spanish version will be
a great resource to give to their Hispanic patients. They liked the simplicity of the
format, the graphics and the color scheme used, and the succinct text
descriptions.
Providers also liked the Spanish version of the booklet to help the dialogue
between the patient and the provider about lupus. More specifically, participant
providers said that including a checklist of symptoms for screening and a
chart/table where patients could write down the medicines they take, are valuable
tools during the discussions with their patients.
When asked, what would they recommend to make lupus educational
materials/resources more relevant/applicable to Hispanic communities, they
indicated that the information should be presented in a simpler way, in brief and
clear summaries or bullets style, and using a larger size text/font. Materials
should be colorful, include pictures of ethnically diverse people, and be more
visual with more use of charts and graphics. Providers also suggested including
a phone number where patients could find additional support/resources.
Additionally, some providers mentioned developing videos/PSAs that feature
celebrities who have lupus and/or lupus patients as spokespersons, to give a
face to the condition and help get rid of the stigma.
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“Sometimes we come across patients who don’t know how to read, so we
have to use illustrations as a guide.”
“Include a checklist, a list of medicines and explain what is each one for.”
“La hora de la novela es una hora importantísima en la comunidad hispana”
(The soap opera hour is a very important time in the Hispanic community).
“Symptoms log, detailed description of symptoms and what they could
expect as the disease progresses. It is important to include the contact
information of the providers.”
“Bilingual resources are good.” “One-pagers, tear-up tablets are really
awesome for that. Spanish on one side, English on the other, because they
are going to take that home and maybe a family member more comfortable
with English, can access the same information.)
“Where to keep a record of the lab work and medicines, like a card.
Something small.”
“Materials with short information, but important information.” “More, pictures,
summaries.”
“Mensaje principal: Sabía usted que…cosas claves” (The main message:
Did you know that…key things).
“Brief summary of disease, most common symptoms, what to expect with
diagnosis, and work up. Always Include message that the condition can be
managed. Take their medicines. Very simple language.”
SUMMARY RECOMMENDATIONS
The following is a summary of the recommendations on preferred
communication vehicles and platforms to reach Hispanics that will help inform the
development of educational materials and other resources on lupus as part of the
Let’s Talk About Lupus—Hablemos del lupus program. These materials will be
disseminated in Hispanic communities and among health care providers serving
Hispanic patients. The development and dissemination of these
materials/resources on lupus aim to help increase Hispanic community
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awareness and knowledge about this condition and will also help connect
individuals to services and informational resources on lupus in their community.
These recommendations are based on the findings from the Community Panel
Discussions (CPDs) conducted with Hispanic women/Latinas and health care
providers on lupus, that took place in Chicago, IL, Houston, TX, New York, NY,
and San Diego, CA, as part of this initiative. These recommendations are also
complemented by responses from the exit surveys that were completed by each
of the participants in the sessions.
Recommendations from Hispanic Consumers
Communication Platforms to Reach Hispanics:
•
Through television, in person/face-to-face (sessions with promotoras at the
community level), radio, health fairs, and churches.
•
Through printed materials like pamphlets, brochures/fact sheets, postcards,
posters in bus/subway stops.
•
Other platforms: Internet, email, text messaging, social media.
•
All content should be provided in both Spanish and English.
Printed Materials on Lupus Format:
•
Develop a small, short and easy-to-read, colorful brochure/fact-sheet with the
basic information about lupus.
o Content: Information should include the definition of lupus, its
symptoms, causes, prevention and treatment. Content should be clear,
simple, concise, and straightforward. Information should be provided in
a way that encourages people to action.
o Layout/Design: The text/font should be in large size; include pictures
and images and drawings if possible. It should include pictures of
Hispanic/Latino families. Include a checklist of symptoms and
table/chart to record symptoms, labs/test, and medicines.
o Language: This brochure/fact-sheet should be developed in a bilingual
format, side by side in English and Spanish.
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o Other: Materials developed should include a phone number of a
helpline in Spanish as a resource, where consumers could call for
more information.
•
Develop a mailing postcard with the basic information about lupus, similar to
the postcards distributed to Hispanic consumers by the Alliance’s Buena
Salud Club.
•
Develop a Spanish version of LFA’s tear-pad with graphic of human body to
explain the symptoms of lupus and how lupus affects the different organs.
Recommendations from Health Care Providers
Communication Platforms to Reach Hispanics:
•
Through health fairs, TV/radio (novelas), health educators/talks at community
centers/clinics, churches, presentations at schools, and support groups.
•
Through printed materials like pamphlets/brochures/fact sheets, flyers,
posters, signs at subway and bus stations, supermarkets and malls; internet
and social media.
•
Through the Ventanillas de Salud program at the consulates, and campaigns
during lupus awareness month.
Toolkit of Materials on Lupus:
•
Printed Materials on Lupus: Easy to understand consumer education
materials with information presented in brief and clear summaries or
bullets style.
o Content: Information about what is lupus, the symptoms,
treatment, what to expect, and management. Emphasize the
importance of the follow-ups with the health providers and the
fact that this disease can be managed. Providers also suggested
to include a phone number where patients could find additional
support/resources
o Layout/Design: Use a larger size text/font. It should be colorful,
include pictures of ethnically diverse people, and make it more
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visual with charts and graphics.
•
Other Formats:
o Checklist of symptoms, labs, and even daily activities.
o Medicines log to record side effects.
o Chart/table to record the contact information of the health care
providers.
o An appointment card.
o A CD/DVD with a patient’s experience with lupus.
o The lupus app.
o Develop PSAs that feature celebrities who have lupus and/or
lupus patients as spokespersons, to raise awareness.
Communication Platforms to Reach Providers with Information on
Available Resources:
•
Email messages.
•
Webinars with CMEs.
•
Posters.
i
Lupus Foundation of America. What is Lupus? Accessed: March 31, 2016.
ii
National Institute of Arthritis and Musculoskeletal and Skin Diseases. Handout on Health:
Systemic Lupus Erythematosus. February 2015. Accessed: March 31, 2016.
iii
Feldman CH, Bermas BL, Zibit M, et al. Designing an Intervention for Women with Systemic
Lupus Erythematosus from Medically Underserved Areas to Improve Care: A Qualitative Study.
Lupus. 2013;22(1):52-62.
iv
Feldman CH, Bermas BL, Zibit M, et al. Designing an Intervention for Women with Systemic
Lupus Erythematosus from Medically Underserved Areas to Improve Care: A Qualitative Study.
Lupus. 2013;22(1):52-62.
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