Genetic Counseling &
Hispanics
Kayla Czape
2009
In order to better serve the
growing Hispanic population
genetic counselors should
become more aware of the
resources available to overcome
language and cultural barriers
Genetic counseling & Hispanics






¿Hispanic or Latino?
Who are Hispanics in the U.S.?
Hispanic culture and the effect on health and
genetic counseling
Barriers that exist when providing genetic
counseling for the Hispanic population
Assumptions that propagate barriers to health care
Adapting the counseling session to provide the
best care for your Hispanic clients
Before we get started



I chose to use “Hispanic” in this presentation for
consistency sake; also it is the more common term used on
medical forms, census forms and in medical literature
The Hispanic ethnic group is extremely diverse; data and
recommendations given in this presentation reflect
Hispanics in general, without focusing on a specific nation
of origin or culture
This is because although the groups can have diverse
cultural practices and be from diverse origins, many core
practices and traditions are similar; also, not a lot of
literature singles out specific groups, and by doing so we
would be ignoring other large groups
http://www.boston.com/news/local/articles/2004/01/25/latino_hispanic_which_is_it/
¿Hispanic or Latino?

The terms “Hispanic” and “Latino” are often used
interchangeably in news and public media, which
creates some confusion for Spanish speakers and
non-Spanish speakers alike

According to Mirriam-Webster’s Online:
– Hispanic is of or relating to the people, speech, or
culture of Spain or of Spain and Portugal; of, relating
to, or being a person of Latin American descent living
in the United States ; especially : one of Cuban,
Mexican, or Puerto Rican origin
– Latino is a native or inhabitant of Latin America; a
person of Latin-American origin living in the United
States
This isn’t very clear either!



The Spanish-speaking Hispanic/Latino
community is divided in itself; surveys
have revealed that:
– 53% have no preference between Latino
and Hispanic
– 34% prefer Hispanic
– 13% prefer Latino
However, 88% of individuals prefer to be
identified by their nation of origin rather
than the broad terms “Hispanic” or
“Latino”
http://www.boston.com/news/local/articles/2004/01/25/latino_hispanic_which_is_it/
Who are Hispanics in the U.S.?
Hispanics in the US are of several countries of origin.
According to the U.S. Census Bureau “Hispanic” refers to
persons of these countries or other Spanish culture origin,
regardless of race, as many of those countries have diverse
racial profiles
U.S. Department of Health & Human Services. The Office of Minority Health. Hispanic /Latino Profile. www.omhrc.gov



According to a 2007 US Census Bureau
estimate, there are approximately 45 million
Hispanics in the U.S.
Hispanics make up approximately 15% of the
population, making them the largest minority
group in the U.S.
Predictions made by the U.S. Census Bureau
indicate that the Hispanic population by 2050
will reach 132.8 million (30%)
US Census Bureau. State and County Quick Facts. http://quickfacts.census.gov/qfd/states/00000.html
CDC Office of Minority Health & Health Disparities: Hispanic or Latino Populations. www.cdc.gov
States with largest Hispanic
populations
U.S. Department of Health & Human Services. The Office of Minority Health. Hispanic /Latino Profile. www.omhrc.gov
Hispanic Culture and its effects
on health and genetic
counseling
“A good starting place for
any discussion of
Hispanic culture is with la
familia, the family”
“Quality Health Services for Hispanics: The Cultural Competency Component.” Special Education
Guide. Dept. of Health and Human Services, Office of Minority Health.
La Familia



Traditional Hispanic families can include many
people that non-Hispanics may not include in
their families: cousins, close friends and
godparents
The extended family members are part of the
support group for the family
Interdependence amongst the family members is
valued over independence of a single family
member
“Quality Health Services for Hispanics: The Cultural Competency Component.” Special Education
Guide. Dept. of Health and Human Services, Office of Minority Health.
La Familia



At a medical appointment, extended family
members may be present to support the ill family
member
Family members are likely to be involved in
decision making process and active in the
interaction at an appointment
Younger family members or later generation
family members who are more acculturated to the
U.S. may have conflicting views with their more
traditional relatives
“Quality Health Services for Hispanics: The Cultural Competency Component.” Special Education
Guide. Dept. of Health and Human Services, Office of Minority Health.
Respect (Respeto)




In Hispanic traditions, respect dictates the social
behavior based on age, sex, social and economic
status and authority
Older adults expect respect from younger adults
and children
Hispanics generally hold health care providers
with a high level of respect, as they are seen as
authority figures with knowledge about health and
disease
Avoiding eye contact with an authority figure can
be a way of showing respect
“Quality Health Services for Hispanics: The Cultural Competency Component.” Special Education
Guide. Dept. of Health and Human Services, Office of Minority Health.
Non-verbal Communication
features



Close physical contact and touching while
speaking is more accepted by Hispanics
Hispanic clients may be comfortable sitting
closer to you than you are used to
Remaining at a far distance can be perceived as
uninterested or detached
Randall-David, Elizabeth. Strategies for Working with Culturally Diverse Communities and Clients.
Association for the Care of Children’s Health.1989.
Barriers that exist when
providing genetic counseling
for the Hispanic population
Language barriers


Many, but not all,
Hispanic families
have limited use
or understanding
of the English
language
Fluency depends
heavily on if a
person is native or
foreign born and
to which
generation they
belong
Pew Hispanic Center. English Usage Among Hispanics in the United States 2007. http://pewhispanic.org/
Fluency in English Increases by Hispanic Generational Status, New Report Claims. 11/30/07
http://www.nshp.org/
Language barriers


Foreign born: Less than a quarter (23%) speak
English very well
Native born: 88% of second generation
Hispanics speak English very well; later
generations increase to 94%
Pew Hispanic Center. English Usage Among Hispanics in the United States 2007. http://pewhispanic.org/
Barriers in access to health care





Limitations to Hispanic health care is influenced by
several factors including: language and cultural barriers
as well as lack of preventative care, health insurance and
prenatal care
Hispanics have the highest uninsured population of any
racial or ethnic group in the U.S.
More than one fourth of Hispanic adults do not have a
health care provider that they see on a regular basis
One fourth of Hispanics obtained no health care
information from a health care professional in the past
year
83% report getting health information from the media;
79% of Hispanics report and acting on that information
they receive from non-health professional sources
Pew Hispanic Center. “Hispanics and health Care in the U.S.: Access, Information and Knowledge”. 2008.
http://pewhispanic.org/
U.S. Department of Health & Human Services. The Office of Minority Health. Hispanic /Latino Profile. www.omhrc.gov
Assumptions that propagate
barriers to health care

A 2005 study in southern Texas looked at
clinicians’ assumptions about the cultural
influences on Hispanic women’s
acceptance of testing and compared that to
women’s acceptance and discussion about
testing
– Interviews of clinicians who discuss prenatal
testing with patients
– Interviews with Hispanic patients who had
been offered amniocentesis
– Observations of genetic counseling sessions
Hunt, Linda M. and de Voogd, Katherine B. “Clinical Myths of the Cultural ‘Other’: Implications for Latino Patient Care.”
Journal of the Association of American Medical Colleges. 80 (10). October 2005. 918-924.




In the interviews clinicians characterized Hispanic
women as “religious, fatalistic, family-centered,
fearful and superstitious”
Over half of the clinicians interviewed indicated that
Hispanics are the most likely women to decline
prenatal testing
They stated that Hispanic women decline testing
because they are devout Catholics who would be
unwilling to consider abortion, or because their belief
in ‘God’s will’ makes them feel they must accept
whatever God sends them
Other prevalent conceptions found in the surveys
about Hispanic views of health care are superstitions,
folk beliefs, brujeria (witchcraft), or mal de ojo (evil
eye)
Hunt, Linda M. and de Voogd, Katherine B. “Clinical Myths of the Cultural ‘Other’: Implications for Latino Patient Care.”
Journal of the Association of American Medical Colleges. 80 (10). October 2005. 918-924.
Interviews with the Hispanic
women




The Hispanic women interviewed for the study did not decline
amniocentesis more often than patients of other ethnicities
60% of the Hispanic women accepted the testing; the general
population range is 57-77%
Of the Hispanic women interviewed, none discussed folk
concepts, brujeria (witchcraft), mal de ojo (evil eye), or other
superstitions as factors in their decision
Although many women did refer to religion and God’s will
during their decision making process, there wasn’t a significant
difference in the decision to test based on whether they cited
religion or not in their interview or counseling session
Hunt, Linda M. and de Voogd, Katherine B. “Clinical Myths of the Cultural ‘Other’: Implications for Latino Patient Care.”
Journal of the Association of American Medical Colleges. 80 (10). October 2005. 918-924.
What all this means




In general, the assumptions made by the clinicians during
their interviews were not held up in the interviews and
counseling sessions with the Hispanic women
The assumptions and expectations we have about
Hispanics and other ethnic groups may not be well
grounded in empirical data
Assumptions like these can lead to self fulfilling
prophecies or different standards of care for specific
ethnic groups
As culturally competent genetic counselors we should
strive for an individualized approach to each patient
without assuming their ethnicity determines their
decisions
Bringing it all together: Tips
for counseling Hispanics




Don’t assume that your client prefers to be
called “Hispanic” or “Latino”; not all people
prefer these terms
Ask their country of origin, as they may prefer
to be addressed as Colombian, Cuban, Mexican
or Puerto Rican
Don’t assume they can or cannot speak English
Greet the patient with a word or two of Spanish
if you know a little; Don’t worry, no harm is
done with simple hellos and goodbyes (but be
sure to use formal “usted” forms, if you are
familiar with the language)



Be accommodating to family members that may
be present at an appointment
Ask your patient about their family to understand
how much they value the opinions of their family
members
However, don’t assume that your patient needs to
consult family members to make personal
decisions
“Quality Health Services for Hispanics: The Cultural Competency Component.” Special Education
Guide. Dept. of Health and Human Services, Office of Minority Health.



Don’t be put off by lack of eye contact, as this
can be viewed as an act of respect
Speak and interact with elderly members of the
family with more formal speech and respect
Engage in a period of friendly conversation to
establish a relationship of trust and respect with
the patient before delving in to personal topics
“Quality Health Services for Hispanics: The Cultural Competency Component.” Special Education
Guide. Dept. of Health and Human Services, Office of Minority Health.



Try to find a balance with regard to personal
space that is comfortable for both you and the
client
Stand or sit slightly closer to the client, especially
if they initiate the close proximity
Remaining at a distance of the customary nonHispanic distance can be perceived as cold or
distant
“Quality Health Services for Hispanics: The Cultural Competency Component.” Special Education
Guide. Dept. of Health and Human Services, Office of Minority Health.
“The desire of health care
professionals to…develop more
effective ways of serving
Hispanic and other patients’
needs will create the kind of
American health care system we
can be proud of”
“Quality Health Services for Hispanics: The Cultural Competency Component.” Special Education
Guide. Dept. of Health and Human Services, Office of Minority Health.
Resources







Diaz, Johnny, “Latino? Hispanic? Which is it?Spanish speakers are divided,
and others are confused.” Boston Globe January 25, 2004
http://www.boston.com/news/local/articles/2004/01/25/latino_hispanic_which
_is_it/
U.S. Department of Minority Health. Hispanic/Latino Profile.
http://www.omhrc.gov
Hakimzadeh, Shirin and Cohn, D'Vera. “English Usage Among Hispanics in
the United States." Pew Hispanic Center. 11/29/07 http://pewhispanic.org/
Livingston, Gretchen. “Hispanics and Health Care in the United States:
Access, Information and Knowledge.” 2008. http://pewhispanic.org/
Randall-David, Elizabeth. Strategies for Working with Culturally Diverse
Communities and Clients. Association for the Care of Children’s Health.1989.
“Quality Health Services for Hispanics: The Cultural Competency
Component.” Special Education Guide. Dept. of Health and Human Services,
Office of Minority Health.
Hunt, Linda M. and de Voogd, Katherine B. “Clinical Myths of the Cultural
‘Other’: Implications for Latino Patient Care.” Journal of the Association of
American Medical Colleges. 80 (10). October 2005. 918-924.
Descargar

Hispanics in the US - Genetic Counseling Cultural