Somali Tuberculosis Patient Education
Teaching Tool for Somalis about Tuberculosis and INH Treatment of Latent TB Infection
In recognition of the role that culture plays in shaping people's attitudes towards illness and their compliance with medical treatment, in 1999 and 2000 six focus group discussions were held among members of the Seattle Somali community. Tuberculosis, health seeking behavior, treatment, and social consequences of the illness were discussed in depth. Discussions were recorded and themes with implications for clinical TB care and treatment were identified. With collaboration from local Somali community leaders these themes were transformed into patient teaching points and subsequently woven into an audio script involving an informal discussion among Somali friends who have gathered at a community celebration, that effortlessly turns to the familiar topic of TB. Finally, the tool was pilot-tested among Somali patients in the clinical setting prior to it being made available here.
Summary of Themes
- Widespread recognition of symptoms associated with Active Tuberculosis. In Somali culture, an illness involving a prolonged cough, especially with hemoptysis, and weight loss is identified as tuberculosis and is known by the name tibisho or qaaxo. There is widespread familiarity with this illness among Somalis.
- Reluctance to accept being 'infected with TB' without having symptoms. TB is a familiar illness and it involves symptoms. It is not easily accepted that someone without a cough, weight loss, enlarged lymph nodes, or other symptoms associated with the illness understood to be TB has TB. Although these symptoms are consistent with the biomedical understanding of major symptoms of active TB, the associated cause, disease process, and needed treatment are understood differently by the community members then that of biomedicine. Specifically related to understanding TB in the absence of symptoms, Somalis have no prior reference point for understanding latent TB infection. It is very rare for a Somali to have had experience with PPD skin testing (evaluation for LTBI) prior to immigrating to the U.S.A.
- Assumption that a normal chest x-ray equals a negative 'screening for TB'. One aspect of the health screening completed prior to coming to the USA as a condition for entry (most often performed in Nairobi, Kenya) is a chest x-ray (not performed for those under age 12). The goal of this pre-asylum chest x-ray is to identify people with infectious TB. When a Somali is told that their x-ray is normal, they are overwhelmingly relieved as they understand this to indicate that they do not have this horribly stigmatizing disease known as TB. Important for the provider to note, this pre-asylum screening does not involve testing for latent TB infection.
- Belief that TB is the worst possible disease. TB is considered the most shameful of all diseases, and it creates a complexity of negative consequences for the ill person and their family. There is not only a widespread fear of others who are known to have TB, with this fear extending to family members. Someone with TB is intentionally isolated, physically and socially, from all aspects of daily life.
- Beliefs about what causes TB is commonly in conflict with the biomedical understanding of the cause of this disease. Although Somali beliefs about the cause and mode of transmission of TB can include an infectious person coughing germs into the air resulting in others subsequently becoming infected after breathing in these germs, which mirrors the biomedical understanding, focus group data clearly indicates that most Somalis don't inherently embrace this understanding and that even those that do still simultaneously believe that there are other causes of this disease. In other words, many beliefs exist and in contrast to biomedicine, these beliefs are not necessarily mutually exclusive. For example, it is common for a Somali to believe that TB is a hereditary disease, passed from generation to generation within a family while also believing that TB is evidence of a curse inflicted as punishment by God as a result of dishonest or unethical acts. This same person may further acknowledge that TB can be passed through the air from a sick person coughing.
- Belief that all Somalis received BCG as a child back home and BCG vaccination causes the PPD test to turn positive. BCG is the vaccine given to protect someone against TB. It is commonly given to babies and young children living in areas of the world where TB is fairly common, including Somalia and Kenya. It is a common belief among Somalis that the positive PPD just indicates that their BCG vaccination was effective and they are protected against this disease. From a Somali's standpoint, if they are feeling healthy, do not have symptoms that they associate with TB, they will be very reluctant to link a positive PPD with the infection/disease called TB.
Teaching Points and Script Content Summary
- The script: emphasizes the need to 'prevent this horrible stigmatizing disease' instead of emphasizing, 'treating an infection' (with the latter being the more common teaching strategy in the clinical setting)
- The script: acknowledges that most Somalis have had a chest x-ray prior to immigrating which they believed determined that they did not have TB
- The script: acknowledges that Somalis have knowledge about TB disease and are familiar with disease symptoms
- The script: acknowledges possible beliefs related to disease/infection etiology and associated stigma, and then builds biomedical knowledge into 'local knowledge' (not the reverse)
- The script: emphasizes that TB is a curable disease
Suggested Use of Audio in Clinical Setting
This audio-based education tool can be used to introduce the topic of TB, prior to even beginning to discuss the need for PPD skin testing or at any step in the TB evaluation process (it can be used after a PPD is determined to be positive, after the x-ray has been performed, before INH has been recommended, or during INH TLTBI to reinforce the rationale for taking treatment for LTBI). After asking your patient to listen to the audio, the following are suggested questions that you can use to assess comprehension of the TB teaching points contained in the audio education.
- Can you tell me what causes TB? How people get sick with TB?
- Can you tell me how you would know that someone has TB? Can someone have TB without symptoms?
- Can you tell me why a doctor might ask someone who is healthy to take medicine for TB?
- Can you describe the difference between BCG and a PPD skin test?
Finally, as a word of caution, it is always important to remember that not all community beliefs acknowledged in the audio discussion will be embraced by each individual patient.
Somali Audio Recording
This audio recording is a conversation between five Somali friends who have gathered to celebrate the naming of a new Somali baby. Four people are conversing as a fifth person, Warsame, familiar to everyone arrives and joins the group. Warsame, explains he is late because he stopped by his doctor's on the way. The subject of this social conversation turns to TB when Warsame states that he no longer trusts his doctor as he told him he has TB and needs to take medicine even though Warsame insists that he is healthy, has no symptoms, and thus can not possibly have TB. Through the course of discussion, Abdi, an older gentlemen who is very knowledgeable about TB helps the others to understand the difference between active TB and latent TB infection (LTBI) and the medical rationale for taking INH treatment for LTBI.
This is a 17 minute audio recording in Somali. The file format is .mp3 and will take some time to download depending on your internet connection. You will also need audio/sound software and speakers on your computer to be able to hear this recording.
Links to Script (Somali and English)
The production of this innovative educational tool was made possible by contributions from the Firland, Annie E. Casey, and Nesholm Family Foundations as well as the National Library of Medicine. In addition, a special thanks goes to Hassan Samatar, the internationally renowned Somali singer who granted permission to use a selection of his music.