Genetic Counseling & Hispanics

1. Genetic Counseling & Hispanics Kayla Czape 2009

2. 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

3. 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

4. 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/

5. ¿Hispanic or Latino?

6. 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!

7. 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/

8. Who are Hispanics in the U.S.?

9. 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

10. 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

11. States with largest Hispanic populations U.S. Department of Health & Human Services. The Office of Minority Health. Hispanic /Latino Profile. www.omhrc.gov

12. Hispanic Culture and its effects on health and genetic counseling

13. “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.

14. 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.

15. 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.

16. 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.

17. 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.

18. Barriers that exist when providing genetic counseling for the Hispanic population

19. 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/

20. 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/

21. 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

22. Assumptions that propagate barriers to health care

23. 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.

24. 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.

25. 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.

26. 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

27. Bringing it all together: Tips for counseling Hispanics

28. 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)

29. 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.

30. 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.

31. 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.

32. “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.

33. 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.