Discuss Diagnosis and Natural History

Expert Commentary by Marie R. Runyon, MS, CGC

Marie R. Runyon, MS, CGC
Genetic Counselor
Hennepin County Medical Center
701 Park Avenue G4 OBTU
Minneapolis, MN 55415
Phone: 612-873-9301
Fax: 612-904-4430
Email: marie.runyon@hcmed.org

Genetic Counseling Somali Refugees

Prior to starting in my current position, my experience with the Somali population had been limited to what I had learned in school. I understood the Somali culture was centered on the Islamic faith, that often women would be covered from head to toe, while woman had power in the home, men handled much of the discussion and decisions outside of the home, and many in the Somali culture prefer fewer medical tests and procedures. I learned quickly that many Somali women were not interested in seeing me, and when offered genetic counseling, almost all would decline. On the rare occasion I would meet with a Somali family it appeared to be because a provider told them it was “necessary.”

The Somali families I would see would be referred for discussion regarding advanced maternal age, a hemoglobinopathy in the family, or an abnormal screen result. I learned quickly that if the patient’s husband was present he would do much of the talking. And while both would listen politely, he would ask and answer all questions. It seemed strange that many of my patients would share their questions with their partner so he could ask me the question. Almost all declined any further screening/ testing options they were offered, with many stating that the outcome of the pregnancy was in God’s hands.

There is one case in particular that stands out to me as a key learning experience in my career. I was asked by a physician I worked with to see a patient in which multiple abnormalities had been noted on prenatal ultrasound. As many Somali patients elect not to meet with me, I was surprised to find this patient had agreed. As with all patients I reviewed with the physician the ultrasound findings and what she had told the patient regarding these findings. The findings included; bilateral choroid plexus cysts, clenched hands, and rocker-bottom feet. In her discussion with the patient the physician stated these findings were consistent with a condition called Trisomy 18 and an amniocentesis could be done to confirm this diagnosis. In addition she recommended the patient meet with me to further discuss the findings and testing options.

Upon meeting the patient I noted she was by herself, something that was uncommon for many of my Somali patients. In addition, although Somali was listed as her first language, she had declined having an interpreter present. During our discussion I asked what the physician had told her about the ultrasound. Her response was that the baby was well, but might have some problems with the hands and feet. I reviewed the findings and discussed the association with Trisomy 18. In addition I discussed further testing options including both the amniocentesis and the quad screen. The patient stated she would speak with her husband and let me know when a decision was made.

Two days later I was surprised to find her on my schedule for consent prior to amniocentesis. This time when I met with the patient, a gentleman was also present. He introduced himself as the brother of the patient’s husband. He was there on his brother’s behalf to find out more about the findings and testing. In the end it was decided the patient would have no further testing.

During my discussion with the patient and her brother-in-law I learned a number of things: the patient did not understand much of our previous discussion due to her limited English; she needed an interpreter but had declined because the interpreter had been male; my explanation of the “why this happened” conflicted with their belief that this happened because it is “God’s will”; and that even though I wanted to have a conversation with the patient, in this situation I should speak to the brother-in-law, as he would be in charge of making the final decision. I felt both embarrassed that I did not have a better understanding of the Somali culture and grateful that the brother-in-law was so willing to share beliefs and ideas that could help to better my understanding of the Somali culture.

Based on my experience with this case I often talk with the Somali interpreters I work with on a regular basis, about the best way to present and discuss information with my Somali patients. They have cautioned me on many occasions that patients from Somalia are in different places of transition. For example, an individual who has recently come to the United States might be more reserved and wish less medical involvement, while an individual who has been here longer may be more “Americanized” and wish to have more involvement from the medical profession.

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.

I have learned the Somali community is a very tight knit community. For many who have had to leave family members behind, community elders take the place of family and are respected and looked to for advice. If a woman’s husband cannot attend an appointment it is not unusual for the husband’s brother, father or other family member to attend. In many cases a decision cannot be made when the options are offered as there may be others in the family or community who may need to be consulted prior to a decision being made.

I still offer the same options to my Somali patients as I do all other patients. I know that there will be many more who will choose against any further testing/ screening. I have accepted that because they prefer to have less medical involvement. There will be times when I may need to be more non-directive in my counseling of Somali patients, such as when a test or procedure is important to the care of the patient/pregnancy.

I have identified resources in my hospital, including Somali interpreters and nurses, who are wiling to share ideas and information about the Somali culture and customs. In addition, when possible, I speak with the patients about their specific ideas and beliefs. I am grateful that I have been given the opportunity to work in a hospital with a very diverse population. While the number of Somali patients I see on a regular basis still remains small, I feel that I have been able to learn to understand parts of their culture and beliefs that are important, and incorporate those into my regular counseling session.  

Marie Runyon is a 2007 Graduate of the University of Minnesota Genetic Counseling Graduate Program. She is currently working as a prenatal and general genetics counselor at Hennepin County Medical Center in Minneapolis, MN. She is also a clinical supervisor involved with the University of Minnesota Genetic Counseling Program. In addition she works closely with both medical students and residents to help further their understanding of the importance of genetic counseling in the practice of obstetrics.

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