Transcript Master Title Starts Here 2 lines Plus as Needed

Enhancing Cultural and
Linguistic Competence in
the Genetic Counseling
Profession
Diversity Rx Conference
October 2010
Nancy Steinberg Warren, MS, CGC
JEMF Fellow
Learning Objectives
1. Participants will be able to discuss the process
of genetic counseling.
2. Participants will know where to find a genetic
counselor locally and nationally.
3. Participants will have educational resources to
enrich their understanding of concepts and
terminology in genetics and genetic
counseling.
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
What is Genetic Counseling???
“Helping individuals and families
understand how genetics affects
their health and lives.”
Genetic Counseling is for
 People of
> all ages
> all ethnicities
> all professions
 Counseling for
> preconception
> prenatal
> pediatrics
> cancer
> adult-onset diseases
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
Genetic Counseling
Process
Counseling Tools
• 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
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Build rapport (contracting)
Active inquiry
Active listening
Patient education (teach-back)
Identify coping mechanisms
Facilitate decision making
Non-directiveness
Respect
Empathy
Support
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
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…
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
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
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
Genetic Counseling Cultural Competence Toolkit
Website Design
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
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
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
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.
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.
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?
Additional Components of the Case
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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
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.”
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?”
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.
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.
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.
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.
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.
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.
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
Resources for the Case
Multilingual Resources
 http://www.brycs.org The 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.html Welcome 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.php This website offers
quality translations of medical information in multiple languages.
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.
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
NSGC Professional Status Survey
March 2009
Genetic Counselors
(2,200 NSGC members)
 Gender
 Race/Ethnicity
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Disabilities
Bilingual
Language familiarity
Frequency/comfort working with
an interpreter
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%
 ??
 ??
 ??
US Population
(300 million people; 1% w/reason to see a GC=3 million
patients/2,000 counselors=15,000 patients/counselor!)
National Society of
Genetic Counselors
Find a genetic counselor
Fact sheets, brochures, other publications
Career information
List of accredited graduate training programs
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
Genetic Counseling and
Cultural and Linguistic Competence
http://www.geneticcounselingtoolkit.com
Inviting your tips and words of wisdom
Share cases or translated documents
Review toolkit content
[email protected]
513 731-8818
Cincinnati, OH
Questions, Discussion, Sharing