Discuss Diagnosis and Natural History

While describing sickle cell disease to this family, it is important to keep their cultural beliefs in mind. In order to appreciate how the Somali culture will affect the patient’s treatment, we suggest the use of the mnemonic tool, ETHNIC. “ETHNIC is neither a scoring sheet nor a detection scheme to uncover hidden cultural issues but rather a clinically applicable tool for eliciting and negotiating cultural issues during healthcare encounters” (Kobylarz et al., 2002). 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 you?
  • What do you think may be the reason you have these symptoms?
  • What do friends, family, and others say about these symptoms?
  • Do you know anyone else who has had or has this kind of problem?
  • Have you heard about/read/seen it on television/radio/newspaper/internet?
  • If the patient cannot provide an explanation, consider asking them “What concerns you about the problem?”

Some individuals may be reluctant to give their impression because they feel that diagnosis is a doctor’s job. However, the use of normalizing phrases like “I often learn important things from hearing people’s ideas about why they are ill and what they think should be done about it” can gently prod patients into meaningful discussion Kobylarz et al., 2002).

Case Application
During the case study described above, the counselor implements the first step of the ETHNIC technique by exploring the family’s explanations for their Asad’s condition. 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.

“In my experience with the Somali population, I have found that the belief in God’s will is very powerful. A majority of the community may share the belief that a condition or illness has affected a family members because it was as God wished. In my counseling sessions when addressing the natural history/inheritance issues I try to address “how” it happened rather than “why” it happened. This helps to show the patient that I acknowledge their “why.” It also helps keep the discussion open as I do not have to make a statement that may be seen as a challenge to the will of God. It also appears to help the patients as they do not feel that they are challenging the will of God by discussing the condition” (Runyon (2010), personal communication).

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 began to use massage techniques with special oils to ease the aches.

As Muslims, the Somali people are forbidden to eat pork or lard or to drink alcohol. They follow strict practices when preparing meat for a meal. They feel that these behaviors keep them healthy and pure. Consider how the family’s observance of Ramadan may influence treatment procedures. Ramadan is the ninth month of the Muslim calendar, when it is believed the Holy Koran Qur’an “was sent down from heaven, a guidance to men, a declaration of direction, and a means of Salvation.” During this entire month, Muslims fast (the Fast of Ramadan), abstaining from food and drink during daylight hours. During Ramadam, Muslims concentrate on their faith through workship and contemplation, and spend less time on everyday concerns. Smoking and sexual relations are also forbidden during fasting. Because the timing of Ramadan is based on the lunar calendar, in some years, Muslims are obliged to fast during long and hot summer days. Fasting can induce physiologic changes that may impact the homeostasis of individuals with chronic conditions, so it is important for health care providers to be sure that Muslim patients are willing to take prescribed pills, etc during Ramadan. Consider whether a modified dosage schedule will work, instead. In this case, Asad is still young and he is not yet required to fast, but the family could be wondering whether Asad’s treatment will interfere with keeping the holiness of Ramadan in the future.

The family is not sure what treatments, if any, they would like to learn from the session. They are confused because their son had survived just fine in Somalia without knowing he had sickle cell anemia. However, family is extremely important to their culture, and they do not want Asad to suffer. They express interest discussing possible treatment options.

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?

Keep in mind that for more acculturated individuals, asking whether they rely on folk healers may be insensitive. Instead, 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 was able to preside over Koran (Qur’an) readings and fire burning procedures. Any immediate concerns regarding Asad were addressed directly 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?

Remember that 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 concern over finding a traditional healer in the United States who can help their son, reinforcing that we can all work together as one team for the benefit of 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).

It is helpful to understand that finding a successful intervention may not be a one-time process, and that these steps may need to be repeated to come to an intervention that is both culturally sensitive and acceptable to the family. However, even if one clear intervention does not emerge from the first encounter, using ETHNIC can help build essential trust between the patient and the provider, thereby beginning to bridge the cultural gap.

Case Application
Everyone agrees that massage therapy should be used to treat Asad’s pain (Sickle, 2004). This therapy has already been effective for the boy. 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.

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