Nancy Steinberg Warren, MS, CGC JEMF Fellow

1. Enhancing Cultural and Linguistic Competence in the Genetic Counseling ProfessionDiversity Rx Conference October 2010 Nancy Steinberg Warren, MS, CGC JEMF Fellow

2. Learning Objectives • Participants will be able to discuss the process of genetic counseling. • Participants will know where to find a genetic counselor locally and nationally. • Participants will have educational resources to enrich their understanding of concepts and terminology in genetics and genetic counseling.

3. Workshop Format • Description of genetic counseling • Discussion of resources on genetics and genetic counseling, including the Genetic Counseling Cultural and Linguistic Competence Toolkit • Questions, discussion, sharing

4. “Helping individuals and families understand how genetics affects their health and lives.” What is Genetic Counseling???

5. People of all ages all ethnicities all professions Counseling for preconception prenatal pediatrics cancer adult-onset diseases Genetic Counseling is for

6. The Genetic Counseling Process Assessment Take a family history Review medical records Genetic (chromosome analysis) and non-genetic tests (X-rays) Education Discuss the nature of the condition, including the contribution of heredity Risks and benefits of options with careful attention to patient comprehension Explain test results Counseling Risk perception, burden of condition Assist selecting (or deferring) decisions regarding the best options Identify and discuss the role of cultural, family and individual values, beliefs, priorities and needs related to the genetic condition Provide supportive counseling and/or referrals to community resources

7. Genetic Counseling Process Counseling Tools Build rapport (contracting) Active inquiry Active listening Patient education (teach-back) Identify coping mechanisms Facilitate decision making Non-directiveness Respect Empathy Support • Case preparation • Reason for Referral • Intake: pregnancy, medical, family hx • Risk assessment and counseling • Inheritance counseling • Discuss testing options or results • Psychosocial assessment and counseling • Resource identification and referral

8. Nondirective Counseling • Communicate all the available information • Remain impartial and objective in the communication process • Assist the person to recognize his or her personal and cultural priorities, beliefs, fears, and other concerns • Facilitate informed decision making

9. Benefits of Genetic Counseling • Determine diagnosis/cause • Anticipate the course of the condition • Communicate management options • Identify physical/health manifestations and • Understand risks to family members • Risks to future children • Appreciate the risks and benefits of testing options • Provide information and facilitate decision making • Provide support • Etc…

10. Reduce Health Disparities • Sensitive discussion of personal, family, and community values are inherent to genetic counseling sessions • There is a need to reach out to African-American, Hispanic and other underserved communities http://sitemaker.umich.edu/healthdisparities/files/introhands.jpg

11. Project Goal • Engage the entire genetic counseling profession in national efforts to reduce health disparities • Reducing health disparities leads to • improved provision of client-centered care across populations • improved communications with clients and overall clinical care • increased recruitment of underrepresented minorities

12. How? • Develop a highly accessible (online) educational resource targeting counselors, training programs (faculty and students), genetics service and training settings, other audiences to promote users’ knowledge, skills, and attitudes to enhance cultural and linguistic competence • Needs assessment: resource portal vs curriculum Genetic Counseling Cultural Competence Toolkit (GCCCT) http://www.geneticcounselingtoolkit.com access from www.nsgc.org

13. Genetic Counseling Cultural Competence Toolkit Website Design Topics Genetics and genetic counseling Cultural and linguistic competence Organizational cultural competence Health disparities Legislation and national standards Multi-lingual information Interpreters and translators Health literacy Cultural mnemonic tools Racism Religion/spirituality Cases Links to websites, webinars, online resources PPT slide presentations Video links and reviews Bibliographies Cultural immersion ideas Teaching tools Clinical tools Self-assessment activities

16. Case Content Development & Review Process • Topic: working with a refugee family • Cases developed by NSW, students • Research, research, research • JGC literature • Project advisors • Peer reviewers • Expert commentators • Re-write, re-review • Try, try, try again Try, Again Try, Again Try, Again

17. Cases • Discuss Diagnosis and Natural History  includes conveying genetic, medical, and technical information about the diagnosis, etiology, natural history, prognosis, and treatment/management of genetic conditions and/or birth defects. • This case explores issues in genetic counseling refugees, specifically the family of Asad, an eight year old with sickle cell disease. The genetic counselor must appreciate the challenges posed to clients who enter the U.S. as refugees. The mnemonic ETHNIC is used to help explain the diagnosis and natural history of sickle cell disease to the family in a way that is consistent with their cultural and religious values and beliefs.

18. Diagnosis and Natural History Case • A Somali family arrived in the United States as refugees three months ago. Upon receiving the typical medical screening, a U.S. public health clinic discovered their 8 year old son, Asad, has sickle cell anemia. The family acknowledges that their son endured chronic pain, headaches, and fevers from early on in life. However, their traditional healing methods had previously offered respite from his pain, and they are confused as to why the diagnosis should change their efforts. They have been referred to genetic counseling to discuss the diagnosis and natural history of sickle cell anemia. On the day of their appointment, the entire family including Asad’s mother, father, three healthy siblings, and two paternal uncles arrive one hour early. An interpreter was present upon arrival but Asad’s father refused his services.

19. Components of the Case Personal Reflections • What is your first reaction to this situation? • What experience do you have working with refugees? • Why do you think the entire family was present? • Why do you think Asad was not diagnosed with sickle cell disease in Somalia? Perspectives • What might the family be thinking and feeling regarding the genetic counseling session? • What are some potential difficulties that could arise in this situation?

20. Additional Components of the Case • Refugee Defined • The Refugee Experience • Health Disparities • Country and Culture • Differences in Health Care • The Genetic Counseling Session • ETHNIC • Summary • References • Resources • Expert Commentary • Evaluation

22. Genetics of Sickle Cell It can be difficult to describe genetic conditions to a family of a different culture. When explaining sickle cell anemia, a counselor may need to explain the basic genetics behind inheritance before describing the specific disorder. The counselor speaking with Asad’s family might say the following: • “The body is made up of millions of cells. Each cell contains information known as DNA that makes us who we are today. Our DNA is located on structures called genes, which are located on the chromosomes inherited from both parents. There is no operation to fix DNA, genes or chromosomes if they are changed (or damaged). This is the case with your son, Asad. He inherited two changed genes that cause sickle cell disease and there is no way to fix them. You are already doing a good job keeping Asad feeling well. Let’s talk more about how to keep Asad from having fevers, headaches and pain.”

23. Using ETHNIC, a Cultural Mnemonic Tool ETHNIC helps health care providers build a framework to create an atmosphere that is welcoming and understanding of the patient’s diverse perceptions on sickness and symptoms, and to include various healing techniques of their culture. E. Explanation • Consider asking such psychosocial questions as:         - How do you think this illness happened to Asad?         - What do you think may be the reason Asad has these symptoms? • If the family cannot provide an explanation, consider asking “What concerns you about the problem?”

24. ETHNIC Case Application The family explains that God created their son with this illness and that he is meant to experience these symptoms. Their family and friends suspect that an evil spirit may be the cause because Asad appeared fine for the first two years of his life. They believe that spirits are often the cause of headaches and fever, which Asad experiences frequently. Their strong Muslim faith supports their belief that the illness is consistent with God’s will. Prior to a few weeks ago, the family had never heard of sickle cell disease.

25. T: Treatment Consider asking such psychosocial questions as: • What kind of medicines, home remedies, or other treatments have you tried for the symptoms? • Is there anything you eat, drink, do, or avoid on a regular basis to stay healthy? • What kind of treatments are you seeking from me? (Kobylarz et al., 2002). Case Application • The family opens up about various treatments they have used to help Asad. Initially they relied on the Koran (Qur’an) to heal him, but the pain would only subside momentarily. They began to implement other techniques including fire burning, herbs, and more frequent prayer. When Asad was old enough to identify and express where he felt pain, they used massage techniques with special oils to ease his aches.

26. H: Healers Consider asking such psychosocial questions as: • Who else have you sought help from for this illness? • Have you sought help from alternative or folk healers, friends, or other people who are not doctors for help with your problems? • For more acculturated individuals, asking whether they rely on folk healers may be insensitive. Remember that this area includes all alternative health care, including widespread Western alternatives such as seeking care from chiropractors and taking herbal supplements (Kobylarz et al., 2002).  Case Application • Because this family has only been in the United States for three months and they have just recently learned about their son’s condition, they most likely have not seen other providers in the U.S. In Somalia, their family relied on a cousin who was a traditional healer. He presided over Koran (Qur’an) readings and fire burning procedures. Immediate concerns regarding Asad’s health were addressed to the cousin.

27. N: Negotiate Brainstorm mutually acceptable options by asking the following questions: • What is the best way for me to help you? • What options would be best, from your perspective? • Your negotiations may extend beyond the patient to caregivers or extended family members, depending on the cultural context of the encounter. The negotiation should seek to find a solution agreeable to ALL participants in the patient’s care or decision-making unit (Kobylarz et al., 2002). Case Application • Your client’s family has already expressed uncertainty regarding Western treatment. They are confused by and/or unaware of the available treatments. The family emphasizes that their treatment in Somalia had worked well and they would like to continue to treat their son in the same manner.

28. I: Intervention Determine an intervention with your patient. • This may include incorporation of alternative treatments, spirituality, and healers, as well as other cultural practices (e.g., foods eaten or avoided both in general and when sick). Case Application • It is important to emphasize the necessity of ongoing medical treatment and tests even if the patient is currently feeling well. Asad should be monitored to avert the need for any extensive treatments that may interfere with their beliefs. • The family expresses interest in finding a traditional healer in the United States who can help their son. The counselor will talk to a social worker who is serving the Somali community to help identify a local healer.

29. C: Collaborate Collaborate with patient, family and/or healers to execute the intervention. Ask: • How can we work together on this and who else should be involved? (Kobylarz et al., 2002).  • These steps may need to be repeated to come to an intervention that is both culturally sensitive and acceptable to the family. Case Application • Everyone agrees that massage therapy should be used to treat Asad’s pain since it has already been effective. The genetics professionals recognize the family’s need to continue traditional health care treatment methods; they do not think that these will interfere with the recommended Western medicine procedures such as routine testing. Shortly after the doctors acknowledge the importance of continuing their traditional healing methods, the family agrees to yearly checkups and testing in the medical center.

30. Expert Commentary for the Case “Over time I have learned to acknowledge that the belief in God and his will is important to members of the Somali community. I have also learned how to present options in a way that does not challenge this belief. Because many in the Somali community believe things happen because it is what God has decided, I have learned to speak of “how” a condition or problem may have happened, rather than to “why” it happened.” Marie R. Runyon, Hennepin County Medical Center, Minneapolis, MN

31. Resources for the Case Multilingual Resources • http://www.brycs.orgThe Bridging Refugee Youth and Children’s Services website offers resources for Educators, Parents, Practitioners, Program Managers, Researchers, and Policy Makers regarding health education, literacy, multilingual pamphlets, program development, and public policy. • http://www.cal.org/co/publications/welcome.htmlWelcome to the United States: A Guidebook for Refugees is provided to refugees being resettled in the United States; available in 10 different languages. • http://www.healthinfotranslations.com/somali.phpThis website offers quality translations of medical information in multiple languages.

32. Cultural Competence • Allow patients extra time and return visits to confer with trusted family and community members about important decisions. • Openly share your interest in learning about different cultures and beliefs with medical interpreters. Interpreters can provide suggestions for helping you communicate more effectively with individuals of specific backgrounds. • Be sure to explain the health care service of genetic counseling. Refugees may not understand what to expect. • At the start of the session, introduce yourself, and ask everyone present to introduce themselves. • Use simple words and diagrams. • Provide context for any information you provide. • Use cultural mnemonics such as ETHNIC to understand a patient’s perceptions of health and illness, build trust, and help patients with medical decisions and management. • Explain “how” a condition occurs rather than “why” it occurs. By doing so, the medical/genetic and the spiritual or alternative explanations will complement, not contradict, each other.

34. Who are Genetic Counselors? • Master’s degree from 2 year accredited training program • Provide information and support to families • Clinical roles • Educators and resource persons • Administrative capacities • Research Modified from the National Society of Genetic Counselors, Inc. 1983

35. NSGC Professional Status SurveyMarch 2009 Genetic Counselors (2,200 NSGC members) Demographics (1,508 members:71% response) 95% female 93% Caucasian, 5% Asian, <2% Black or African American, Hispanic, Native American, Native Hawaiian or Other Pacific Islander ~.8% ?? ?? ?? • Gender • Race/Ethnicity • Disabilities • Bilingual • Language familiarity • Frequency/comfort working with an interpreter

36. US Population (300 million people; 1% w/reason to see a GC=3 million patients/2,000 counselors=15,000 patients/counselor!)

37. National Society of Genetic Counselors Find a genetic counselor Fact sheets, brochures, other publications Career information List of accredited graduate training programs

38. Resources for Genetics and Genetic Counseling • Genetics • Learn.Genetics: Genetic Science Learning Center, University of Utah • http://learn.genetics.utah.edu/ • Genetics Home Reference: National Library of Medicine • http://ghr.nlm.nih.gov/ • Genetic Counseling • March of Dimes • http://www.marchofdimes.com/pnhec/4439_15008.asp • Guide to Genetic Counseling: the Genetic Alliance • http://www.geneticalliance.org/counseling.guide

39. Genetic Counseling and Cultural and Linguistic Competencehttp://www.geneticcounselingtoolkit.com Inviting your tips and words of wisdom Share cases or translated documents Review toolkit content nancysteinbergwarren@gmail.com 513 731-8818 Cincinnati, OH

40. Questions, Discussion, Sharing