genetic counseling & hispanics

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Genetic Counseling & Hispanics Kayla Czape 2009

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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? - PowerPoint PPT Presentation

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Page 1: Genetic Counseling & Hispanics

Genetic Counseling & Hispanics

Kayla Czape2009

Page 2: Genetic Counseling & Hispanics

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

Page 3: Genetic Counseling & Hispanics

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

Page 4: Genetic Counseling & Hispanics

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/

Before we get started

Page 5: Genetic Counseling & Hispanics

¿Hispanic or Latino?

Page 6: Genetic Counseling & Hispanics

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!

Page 7: Genetic Counseling & Hispanics

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/

Page 8: Genetic Counseling & Hispanics

Who are Hispanics in the U.S.?

Page 9: Genetic Counseling & Hispanics

U.S. Department of Health & Human Services. The Office of Minority Health. Hispanic /Latino Profile. www.omhrc.gov

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

Page 10: Genetic Counseling & Hispanics

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.htmlCDC Office of Minority Health & Health Disparities: Hispanic or Latino Populations. www.cdc.gov

Page 11: Genetic Counseling & Hispanics

States with largest Hispanic populations

U.S. Department of Health & Human Services. The Office of Minority Health. Hispanic /Latino Profile. www.omhrc.gov

Page 12: Genetic Counseling & Hispanics

Hispanic Culture and its effects on health and genetic

counseling

Page 13: Genetic Counseling & Hispanics

“Quality Health Services for Hispanics: The Cultural Competency Component.” Special Education Guide. Dept. of Health and Human Services, Office of Minority Health.

“A good starting place for any discussion of

Hispanic culture is with la familia, the family”

Page 14: Genetic Counseling & Hispanics

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

La Familia

“Quality Health Services for Hispanics: The Cultural Competency Component.” Special Education Guide. Dept. of Health and Human Services, Office of Minority Health.

Page 15: Genetic Counseling & Hispanics

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.

Page 16: Genetic Counseling & Hispanics

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.

Page 17: Genetic Counseling & Hispanics

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.

Page 18: Genetic Counseling & Hispanics

Barriers that exist when providing genetic counseling for the Hispanic population

Page 19: Genetic Counseling & Hispanics

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. 11/30/07http://www.nshp.org/

Page 20: Genetic Counseling & Hispanics

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%

Language barriers

Pew Hispanic Center. English Usage Among Hispanics in the United States 2007. http://pewhispanic.org/

Page 21: Genetic Counseling & Hispanics

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

Barriers in access to health care

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

Page 22: Genetic Counseling & Hispanics

Assumptions that propagate barriers to health care

Page 23: Genetic Counseling & Hispanics

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.

Page 24: Genetic Counseling & Hispanics

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.

Page 25: Genetic Counseling & Hispanics

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.

Page 26: Genetic Counseling & Hispanics

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

Page 27: Genetic Counseling & Hispanics

Bringing it all together: Tips for counseling Hispanics

Page 28: Genetic 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)

Page 29: Genetic Counseling & Hispanics

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.

Page 30: Genetic Counseling & Hispanics

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.

Page 31: Genetic Counseling & Hispanics

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 non-Hispanic 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.

Page 32: Genetic Counseling & Hispanics

“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.

Page 33: Genetic Counseling & Hispanics

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.