Discuss Diagnosis and Natural History

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.

Personal Reflections

What is your first reaction to this situation?

What experience do you have working with refugees?

What experience do you have working with Somali families?

Why do you think the entire family was present?

Why do you think Asad was not diagnosed with sickle cell disease in Somalia?


What might the family be thinking and feeling regarding the genetic counseling session?

What should the counselor consider before the appointment begins?

What are some potential difficulties that could arise in this situation?


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