http://www.investinginourfuture.com/somalia/tb1/
Reaching warring and nomadic populations
Despite many challenges related to war and nomadic migration, the TB grant to Somalia has achieved outstanding results: Over 20,000 TB patients have been diagnosed and treated in less than 2 years. Somalia, which has been at war since 1991, is now divided into three zones: Somaliland, Puntland and South Central Somalia. Somaliland and Puntland have mostly nomadic populations, constantly moving in search of pasture and markets for their animals. By contrast, South Central Somalia is inhabited by settled agro pastoralists who are constantly at war, which also tends to disrupt treatment.
In addition, implementers of Global Fund grants have to engage three Ministries of Health from the rival governments to decide on budgets, and to successfully implement projects. Dr. Vianney Rusagara is manager for the Global Fund's TB grant with World Vision Somalia, which collaborates with a number of organizations. He explains how grant implementers and recipients have achieved and maintained these successes.
" When a service has good results it is appreciated even by the warring factions and they try as much as possible to protect it.we have a slogan: `Good projects are a security by themselves'"
Fighting TB in Somalia
Published in August 2006
Part 1: Delivering TB Services Successfully to Nomadic Populations
Q. Welcome, Dr. Rusagara, maybe you could begin by telling us about Tuberculosis in Somalia in general.
The disease in this country is considered to be quite prevalent, the figures we have indicate that it is one of the high burden countries in the region and in the world; TB is quite a big public health problem, it is also shared by the local health authorities, whenever they put their top priorities it comes in the top three.
Q. And what percentage of Somalia's population is nomadic?
In the North, Somaliland and Puntland have a higher figure of nomadic communities than the south because in the South we have agro-pastoralists who are more or less settled. Probably it could be 40% nomadic and maybe 60% agro pastoral.
Q. How many TB patients have you reached and treated successfully?
Since the Global Fund programme started, we have seen a total of 22,178 TB patients, and this is actually up to end of June this year, so it is like a year and three quarters. Out of these 12,042 were smear positive. During the first year of the programme the treatment success rate has been 88.1 % .
Q. How do you manage to reach constantly migrating communities with treatment, especially since TB treatment needs continuous patient monitoring?
We have been trying to establish facilities in almost all regions, which we have achieved. there are 18 regions of Somalia; we have a facility at least in every region. With the nomads moving around it is quite a big challenge especially in the long drought months they can move hundreds of kilometers away sometimes even in other countries like in Ethiopia for example. so it's a big challenge. However, when it's not the long drought month there are predictable areas where they can be found and they do have a nucleus location where they sell their meat and milk and from these points they can access health facilities, but as I say it's a major challenge really.
What the TB programme has been doing.through the health information system, if we know some patients who might move then they are transferred probably to the next facility because there has to be communication with a nearby facility where they could go, however of course some of these people may not go to areas where there are facilities. We have been having ideas of how to reach them, like mobile case findings, we have been discussing if possible, nomadic health workers who would be able to move to follow these people, and preferably from these communities who would ensure that at least the very necessary basic services can continue to be given to these communities.
The numbers have been very encouraging, there has been an increase of case detection of TB patients, and the Global Fund has accelerated this so much in the last 2 years since the Global Fund came in, we had about 30 TB centers across the country, now the number stands at 46. This has even provided services to remote areas than before.
Q. And what about staffing? Do you always have health personnel all through the year?
We train at least a minimum of two health workers to provide DOTS and a minimum of one laboratory microscopist who will do the diagnosis. Some of these trainees go and train the other workers at their health facilities, and in addition to that we have a team of supervisors, clinical and laboratory supervisors from the Somali nationals who are quite mobile and they monitor and do-on job training.
Part 2: Treating TB Successfully in a War Zone
Q. About the wars in the South and Central parts of Somalia, how do they affect your work on TB treatment?
The problem it might bring along is lack of access to these health facilities, and incidentally that is why we have many facilities- about two-thirds are in the South and Central parts of the country. The major worry is that we may not be able to supervise and monitor routinely, we may have a problems of stocks running out, but because we have been anticipating these kinds of problems, we supply drugs and lab needs worth of 3 months, in addition we give a buffer supply just in case we cannot access, the centers will have some supplies for a couple of months until things are okay.
We may get reports late, then the supplies naturally will go late also, but we have been trying to minimize this by having the supervisors proactively going to these centers and trying to get reports in good time.
Q. Could you maybe describe a health worker's daily experience in the South and Central part of Somalia? How are they able to reach so many patients?
From one facility to the other, the roads are ruined, it takes long hours to reach from one place to the other, and some places are only reachable only by air, and of course there is limitation of air services, so we rely on the flight `ECHO' which is by the European Union, and then there is also United Nations provided aircraft which we have to pay and its quite expensive, most of the time we don't prefer this because of costs. There are so many road blocks also with Militias manning along the roads so sometimes it is difficult and also for international staff it is not possible to reach everywhere
The other thing we have been fighting is to keep the patients on the treatment throughout the 6 or 8-month period. In Somalia there has been a system that we call `Dameen' (Guarantor).Dameen is derived from Arabic. Before a patient starts, a guardian, parent, relative or a responsible person has to sign a sort of agreement that they will ensure that the patient will continue the medicine until the course is finished. When this patient is not seen, the health workers go and trace the person who guaranteed the patient, and this person who guaranteed is supposed to trace the person to bring them back.
Part 3: Warring Factions Unite to Protect Somalia TB Programme:
Q. In a country where three different political factions are fighting for natural resources, is this also the case when sharing funds across Puntland, Somaliland, and Southern Central Somalia?
Absolutely! This is something which comes up over and over again, and it's a challenge not only to TB but to all other humanitarian interventions. Let me say that we try to discuss and be transparent. We share all information possible including the budget. In our case where the total budget and summary of the Global Fund is on the website, it is not very difficult. However, we gather all the authorities in a round table- (Q. Yes, really?) Yes! an example is in May (2006) we had the 3 ministers Of Health discussing the budget of year 3.
Q. During international conflict resolution efforts, the three political factions have rarely able to share the same room; do they really agree to sit on the same table and plan TB services?
Yes ! They do, like in TB, the technical people who represent the ministry meet together and we arrive at consensus, sometimes after long, long discussions.
On the TB we have been a bit luckier than other sectors, but what we probably have done is to be as transparent as possible, and go the extra mile and reach out to them.
Q. I think we have got the general idea - we were discussing how you manage to provide services successfully to nomadic and warring populations; is there anything you would like to add?
Yes, yes, let me mention that, with all the insecurity, especially in the South and Central Somalia, when a service has good results, it's appreciated even by the warring factions and they try as much as possible to protect it. We have a Slogan in this place that `Good projects are a security by themselves', so if the beneficiaries- the communities see the good results, they will do anything to protect the activities and the projects. TB is one example, I would say- even Malaria for that matter for the Global Fund. they are all protected really, because they see the benefits. They would not like to interfere.if there is a problem arising in relation to these programmes, they will work towards getting a solution, as much as possible. Like even when we are moving, for example in the last 3 days we have been driving around, they provide security and . We are in the North, (Somaliland) we have a team which is in Puntland, we are in touch with them and all is okay, though requirements are that we go with police escort. Of course, we provide a cost!
Endorsed February 6, 2004
Objectives:
The main objectives of the working group are to ensure that the activities of all the TB control programmes in Somalia are well coordinated and that they follow the WHO Standard Guidelines for TB Control in Somalia.
Tasks of the Working Group:
* To support the review and implementation of a strategy for TB Control in Somalia for the coming three years (including the appeal for funding of the different components of the strategy);
* To provide a forum for information sharing on TB;
* To provide technical and managerial support to on-going TB projects and new proposals
* To strengthen information gathering on TB (cohorts reports);
* To provide a regular update on the situation according to the different components of the TB Programme (# of suspected TB cases, supplies distribution and availability, laboratory performance and quality control, cohort analysis, food aid support) in strict observance of WHO and WFP guidelines;
* Based on the updated situation analysis and according to the TB Guidelines, to decide upon the need for establishing, expanding or closing down TB projects in particular areas;
* To assist in the preparation of technical documents and reports to be presented at workshops and seminars;
* To assist WHO in the selection of Somali professionals to be sent to international TB training courses;
* To revise the TB guidelines in accordance with the changing situation in Somalia and in the Horn of Africa;
* To provide to the I.E.C Working Group with the appropriate TB Programme messages for inclusion in the behavioral change strategy;
* To identify the need for the support of a consultant and set the terms of reference of TB Consultants (when such support is required);
* To assist in the selection of TB experts;
* To support the work of the TB experts;
* To assist in identifying and advising the SACB TB Focal Point for the Global Fund; and
* To support the implementation of joint proposals for funding, e.g. Global Fund, Global Drug Facility.
Procedures:
* The meetings will be held on a monthly basis, depending on the number and relevance of the issues to be discussed;
* WHO will chair the monthly meetings providing its technical expertise;
* SACB will invite to the monthly meetings all relevant partners (WHO/NGOs running TB projects /WFP/local authorities);
* Cohort analysis should be performed on a quarterly basis, presented by WHO and based on information provided in a timely manner by their partners (mandatory according to the guidelines); and
* The workplan of the group will be established annually together with the WHO Medical Officer.
Priorities for the TB Control Programme in 2004
* To guarantee continuous provision of services in the already functioning TB centers/hospitals allowing the TB program to maintain the high success rate (88% in 2001) needed to curb the epidemic in the country;
* To expand DOTS activities by opening new TB centers in different areas of Somalia (with special focus on underserved areas). This will allow the improvement of case detection (around 40% in 2002) so to reach the global target of 70% by the year 2005. DOTS expansion should be organized in a phased and highly supervised manner;
* To develop new TB guidelines for Somalia (previous guidelines developed in 1994);
* To develop the strategic plan for TB control in Somalia 2004-2007, based on the SACB strategic plan for 1999-2003;
* To strengthen the quality control system for TB laboratories through the introduction of regular internal and external quality control in all TB centers/hospitals;
* To gradually introduce new regimens based on 4 FDC (Fixed Drug Combination) through pilot projects;
* To promote the participation of Somali doctors/nurses to training activities and workshops at national and international level so to continue the capacity building effort for health personnel (see below);
* To strengthen collaboration with the HIV-AIDS control programme and promote integration of activities in response to the growing threat posed by the HIV epidemic in Somalia;
* To enhance partnership with the private sector to limit the misuse of anti-TB drugs and the risk of insurgence of drug resistant TB strains;
* To facilitate the submission of a new application to the Global Fund and to other funding structures available; and
* To provide technical support to the HSC to enable it to fulfill its role as CCM for the GFATM.
Currently Chaired by WHO
Background and Epidemiology
Tuberculosis is endemic in Somalia and is one of the leading causes of morbidity and mortality. Aside from security TB in Somalia is reported as the greatest barrier to stability and economic development. The civil war caused an unprecedented collapse of the national TB Control Programme.
The Programme was supported in its initial stages by FINDA (Finish International Development Agency). Subsequent attempts to support TB have been supported by WHO in collaboration with International NGOs. In 1986 FINDA conducted a Tuberculin survey in Kismayo, Burao and a refugee health unit. The results for children over 10 years showed a high annual risk of infection - 3.66%, 3.08% and 4.9% (Clinic Infect Dis. 1994 Jan; 18(1): 106).
In a refugee camp in 1989, 3 of all adult deaths were due to TB. In two camps in eastern Sudan in 1990, 38% and 50% of all adult deaths were due to TB (WHO/TB/97.221).
Somalia is estimated to have one of the highest incidence rates of TB in the world. It is estimated that each year, around 12,000 sputum positive cases occur, out of which only 3 are detected and receive treatment in a supervised DOTS Programme. TB can be considered a major public health problem in Somalia, affecting the most productive age groups of the community.
TB Control Strategy
The strategy used at all the TB centres is DOTS. All 5 components of the DOTS strategy are implemented in Somalia; WHO and INGOs are committed to TB control in Somalia. WHO appointed a full time MO for TB in '98. WHO produced and distributed TB treatment guidelines in 1994.
Case finding is mainly passive, though smear microscopy and DOTS is practiced strictly in all implementing centres. Patients are observed daily by a health worker at the clinic. A system of appointing a guarantor at the start of treatment helps in assuring compliance. Quality drugs are procured by WHO and distributed to all centres. WHO recommended recording and reporting procedures are in place.
TB Control activities.
Ten international NGOs and one individual presently support and operate 16 TB centres in 11 out of 18 regions giving a DOTS coverage of approximately 56%. DOTS coverage has increased from 45% in '98 to 56% in end '99 under the leadership of WHO's revitalization policy for the TB program in Somalia. Using regular budget funds WHO has been providing laboratory support, training, anti-TB drugs and limited laboratory quality assurance to these programs. All these programs have fully implemented the DOTS strategy and have achieved remarkable results under extremely difficult situations. The location and population covered is given in table 1 below.
Table 1: Location and catchment Population of TB centres
Location Region NGO Est.Population Adale Middle Shabelle ADRA/SAACID 451,300 Boroma Awdal Annalena Tonelli 147,300 Berbera Galbeed COOPI 336,000 Burao Togdheer COOPI 248,400 Bosasso- Gardo Bari Mercy Intl. 247,400 Hargeisa Galbeed KJRC 300,000 Las Anod Sool NPA 66,300 Mogadishu Benadir Mercy Intl. 752,000 Mogadishu Benadir ADRA/SAACID - Jilib Middle Juba Mercy Intnl 205,900 Kismayo Lower Juba MSF- B 300,200 Luuq Gedo AMREF 358,400 Abuudwaq Galgadud AMREF 200,800 Garbahare Gedo MEMISA - Belethawa Gedo TROCAIRE - Total (16) 11 10+1 3,314,000Case notification and trends.
During 1999, a total of 4784 cases of TB (all forms) were reported (table 2). During 1995, 1996, 1997 & 1998, 2504, 3920, 4450 & 4320 cases were reported (all forms).
DOTS is practiced strictly in all implementing centres. A system of appointing a guarantor at the start of treatment helps in assuring compliance.
As can be seen from the notification figures in table 2, the number of SS+ cases being detected and put on treatment, (the infectious pool) is increasing over the years.
The highest number of cases are in the most productive age groups of 15-44 years, and the ratio of males to females is 2:1.
Table 2: Case notifications
Year Smear+ve Smear-ve Ex-pulm Relapse Others Total
1995 1572 582 247 103 0 2504 1996 2894 366 394 266 0 3920 1997 3093 423 453 143 338 4450 1998 3121 442 328 172 249 4320 1999 3449 424 524 204 183 4784The most productive age groups of the community (15-44 years) are most affected. Women seek treatment less than men.
DOTS Outcome
Remarkable progress has been made in a short span wherever TB centres are present, with average smear conversion rates of 92%, cure rates of 88% and success rates of 90%, reported in 1998 (Table 3) despite some centres being located in areas of conflict and insecurity. Table 4 shows that the overall cure rates have increased from 71% in 1996 to 88% in 1998.
Table 3: Treatment outcome reported by centre for all 4 Quarters of 1998 (Jan - Dec).
TB centre/NGO Cured(No./%)- Treatment - completed - Died - Failure- Defaulters- Transferred out- Total evaluated
Abudwak/AMREF 37/97% 0 0 0 0 1 38 Adale/ADRA 11/92% 0 1 0 0 0 12 Belethawa/TROCAIRE 123/98% 2 1 0 0 0 126 Berbera/COOPI 217/76% 29 16 3 13 7 285 Boroma/A. Tonelli 849/91% 3 40 2 28 7 929 Bosasso/Mercy Intnl 103/80% 0 11 4 10 1 129 Garbaharey/MEMISA 103/90% 0 4 0 4 3 114 Kismayo/MSF(B) 185/84% 1 9 15 3 7 220 Luuq/AMREF 123/90% 1 7 0 3 2 136 Mogadishu/Mercy Intl. 386/90% 0 17 8 17 0 428 Hargeisa/KJRC 222/84% 9 3 3 14 13 264 TOTA2359(88%)45 (2%)109 (4%)35(1%)92(4%)41(1%)2681Table 4: Treatment outcome results 1996-98.
Year - Success Rate - Cured - Treatment completed - Died Failure - Default - Transferred out
1996 83% 71% 12% 5% 3% 8% 1% 1997 90% 84% 6% 4% 1% 4% 1% 1998 90% 88% 2% 4% 1% 4% 1%Recording and Reporting
Treatment registers, treatment cards and laboratory registers are well maintained at most centres. In 1998, second half, new TB and laboratory registers were printed and distributed, in addition a wall chart on case definitions etc., was printed and distributed to all centres as a ready reference. An innovative quarterly TB Newsletter has been started by WHO in 1999, to act as a feed back & advocacy tool. 3 issues have been published & distributed till now.
Remarkable progress has been made in a short span, with conversion rates of 92% and cure/success rates of 88/90%.
Human Resources and training.
All centres have national staff supervising TB activities. Each centre has a laboratory technician and other paramedical staff. Five national doctors were provided with WHO fellowships to attend the IUATLD TB training course in Iran in 1997 and 4 doctors attended the same course in Arusha Tanzania, in '98 & `99. In service training is provided by the WHO TB Coordinator & national coordinators.
The WHO/UNV laboratory supervisor has provided training and conducted quality control checks mainly in the NE and NW regions.
Private sector
TB drugs are freely available all over Somalia from drug retailers. TB patients who can not receive treatment at TB centres continues to access the private sector for medication. Inaccurate treatment and prescriptions are common.
Constraints
1. Expansion of DOTS projects is dependent on the frequently changing security situation in the country.
2. TB projects are often stopped due to discontinuation of donor support.
3. Since there is no central government, there is no control over private practitioners and phamarcies. As a result TB treatment in the private sector is haphazard and indiscriminate. This may lead to dangerous increase in multi-drug resistance.
4. Shortage of funds to procure an adequate and uninterrupted supply of TB drugs.
Conclusion
TB control in Somalia is challenging in the complex circumstances of political instability and insecurity. However, analysis of the DOTS outcome data collaborated by field supervisory visits suggests that DOTS is applied correctly at most centres and demonstrates that DOTS works as effectively in complex emergency countries such as Somalia.
Improving access, training the private sector, strengthening the capacity of national staff and advocacy for resource mobilization are of paramount importance to expand coverage and sustain the gains made already under TB control in Somalia.
DOTS works as effectively in complex emergency countries such as Somalia.
http://ethnomed.org/clin_topics/tb/cultural/soma_tb_profile.htm
Written by: David Citrin, Graduate Student in Sociocultural Anthropology PhD Program, University of Washington
Reviewed by: Anab Abdullahi, Medical Doctor in Somalia, Medical Interpreter
- Background & Methods
- Diagnosis & Clinical Features
- Language
- Traditional Treatment
- Contagion, Stigma & Isolation
- Skin Testing, BCG, Latent TB
- Recommendations for Providers
- Research Summary and References
- Patient Education Materials
- Acknowledgements
Background & Methods
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, social meanings and consequences of the illness were discussed in depth. Discussions were recorded and themes with implications for clinical TB care and treatment were identified. In collaboration with 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 on EthnoMed. This teaching tool Somali Tuberculosis Patient Education can also be viewed on EthnoMed.
The following profile was written after reevaluating the focus groups' transcripts and was reviewed by the Ethnomed team, Dr. Carey Jackson, director of the International Medicine Clinic at Harborview Medical Center, and Anab Abdullahi, Somali interpreter on staff at Harborview.
Note: The information provided below has been identified in an effort to promote a greater understanding of the cultural variation in how illness, disease and the body are experienced. The lived experience of tuberculosis must be seen as inherently individualistic and a reading of these topics alone should not bestow a sense of complete cultural competency. Rather, this reading should be a first step in further exploring the constantly changing meanings associated with Tuberculosis.
Diagnosis and Clinical Features
Somali informants expressed varying beliefs concerning the contraction of TB ranging from punishment for dishonest or bad deeds, a test of humanity, heredity, sorcery and witchcraft, environmental factors like overwork, distrust or loss of faith, as well as beliefs in concordance with Western biomedical understandings of TB contraction.
For many, tuberculosis is distinguished from other causes of coughing on the basis of hemoptysis and/or weight loss. A cough, either productive or nonproductive, is considered to be a chest infection or inflammation (hergab) until hemoptysis, or the weight loss characteristic of tuberculosis, occur. When fever and chills are prominent and hemoptysis is absent, tuberculosis may also be confused with malaria.
Although symptoms such as cough, weight loss and enlarged lymph nodes are consistent with the biomedical understanding of major symptoms of active TB, the associated cause, disease process, and needed treatment may be understood differently. Some Somali informants identified various phases of coughing, the second of which might be referred to as waren. This phase is characterized by sharp pains in the chest and difficulty breathing, symptoms potentially signaling a sickness more serious than just a cold or cough. The different sounds of a cough are also identified as markers of various and changing phases, for which traditional treatment might also change.
Language
The Somali word for cough is qufac. Most Somalis use "TB" or tibisho (derived phonetically from Italian) when talking about tuberculosis. Tibisho is used more commonly in southern Somalia. In parts of Somalia north of Mogadishu, the word qaaxo (pronounced "kah-ho") is sometimes used for tuberculosis. Qaaxo and urug are historical Somali words for the entity of tuberculosis with cough and hemoptysis. Both words bring to mind a powerful dark image of an isolated, ill person who is close to death. Qaaxo may even be used as a curse, however informants note that falling victim to qaaxo is different than being possessed by a jinni, an evil spirit.
Many Somali informants identified a community member known as a Ma'alin, or an elder who can be a teacher, herbalist or practitioner consulted for TB treatment. Such a "special elder" is believed to know which trees, roots and herbs from the forest can be used to treat an illness or disease. For example, wanzilo is the name of a tree sometimes used in preparing one traditional remedy. The bitter leaves of this tree are collected, boiled and put in a bucket. The afflicted person will then inhale the steam slowly let out by means of a cloth.
Haba sodah is a black seed that is mashed and used with a hot oil to massage the body of someone with TB. The aim of this process is to induce sweating, which is believed to release heat. The seed is also prepared as a tea, which the person afflicted would drink. Haba sodah is available at certain grocery stores here in the U.S. (see also Traditional Treatment section below)
One Somali term used by informants to describe the isolation a women infected with TB undergoes is mahabia. The word used to refer to the hut (made of branches and large leaves) where a person might be isolated is mudul.
Traditional Treatment
"All the medicine, any type of medicine, no matter what the provider is prescribing to us, we have to start with the name of Allah, and we are saying that, God, if this one will be a treatment for me, make it or not, the judgment is yours. At the same time we are asking God, make me the good treatment for the disease."
There exists a vast array of treatments used to care for TB, though, if possible, treatment tends to combine both traditional remedies, prayer, elderly practitioners (Ma'alin), as well as Western, allopathic medicine. The order in which these are sought, particularly as a result of the strong social stigma attached to the disease, tends to favor traditional treatments that can be used privately. The combination of local remedies can vary based on locality (nomadism, urban or rural), relations to environmental surroundings and animals (sea animals, birds or foul, domesticated, etc), folklore, and the varying beliefs of community elders who are considered extremely knowledgeable regarding herbs and other remedies.
Reading specific sections of the Koran is regarded as one of the most widely used treatments for TB. Because God is often considered the sole cause of TB, which extends to varying beliefs regarding tests of faith or punishments, the Koran is often read after ablutions (the ritual act of washing) are performed. A Ma'alin may be called upon to read, or the entire family may participate, as TB is considered a sickness that affects the entire family, particularly through social stigma. Some informants expressed that reading any part of the Koran is "medicine," as it can be considered the sole source of family, peace, sickness and health.
One common folk remedy for coughing used by Somali children and adults consists of a mixture of raw eggs, butter (similar to Indian ghee) and honey. Adults may make this for themselves early in the course of an upper respiratory infection. Young children with a cough may sometimes undergo a uvulectomy (a procedure whereby a piece of the uvula - the little bit of flesh that hangs down from the rear portion of the soft palate- is cut). Drinking camel's milk is also believed to be beneficial to someone who is sick, as it induces urination and bowel movements, which clear out the stomach of maladies. Some rural Somalis will be familiar with herbal treatments that use tiire or khabayere. These are tree roots which may be cooked with meat for special diets or boiled for ritual bathing, drinking and cloth compress.
When an illness is identified as tuberculosis, the family may prepare an especially nourishing diet (baan) used to hasten the recovery from any serious illness or from pregnancy. This diet may include the consumption (at times entire) of a ritually sacrificed animal (camel, sea turtle, condor, chicken still laying eggs, hyena, sheep and fish were all mentioned based on varying locations and beliefs), and may consist of drinking rendered animal fat and eating liver, milk (rarely consumed by adults otherwise), eggs, and a mixture of dried meat and butter. A person who uses the stimulant khat (also called miraa) will stop chewing it because its respiratory stimulation properties, though beneficial for asthma and malaria, are thought to be harmful for tuberculosis. A traditional healer may also be sought to administer small, round burns with the end of a hot stick.
Some Somalis discussed a lack of treatment for TB as a result of a fatalistic belief in the power of God. To quote one informant: "The bottom line is God created all the human beings and He knows the day that He created them, He knows the day that he was born until his death, so all the passages that he's going to pass, that person, God, He designed it. So there is no way that it can be changed by doctors or by spiritual leaders or by anybody." (see also section on Language above)
Contagion, Stigma and Isolation
"As you know, I still feel the worst disease is the TB. The person who is infected with the disease, I won't, I will never be close to him, I'm afraid of his air, afraid that his airwave will reach me, or the glass that he drinks, I would have to avoid to even touch, not just sharing, but even touching his glass."
Beliefs about what causes TB may 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, which results in others becoming infected after breathing in these germs (this mirrors the biomedical understanding), focus group data clearly indicates that most Somalis don't inherently embrace this understanding, and that even those that do may simultaneously believe that there are other causes of this disease. The most prominent belief expressed was that the contraction of TB is a result of "God's will." In other words, many beliefs exist, and while some are in contrast to biomedicine, they 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 (some believe for as many as six generations) within a family while also believing that TB is evidence of a curse inflicted as punishment by God for dishonest or unethical action. This same person may further acknowledge that TB can be passed through the air from a sick person coughing. Additionally, there are at times suspicions that an infected person may intentionally contaminate the food or water source of others to be vindictive, a mistrust that may stem from fear and misunderstanding related to TB contagion.
Because treatment for tuberculosis has only become known in Somalia within the last few decades, and even now is too expensive for many families, the diagnosis of tuberculosis has traditionally meant a lifetime of illness and stigma. Those with tuberculosis fear that others will shun them. Nomadic families might move their huts away from a family that has tuberculosis. Tuberculosis sufferers are often confined to their own huts and given their own utensils and drinking cup instead of being allowed to eat with their hands from the same plate of food or drink from the same cup as family and friends, as is customary.
"Once we are sure that the person has TB, we'll worry because we know we are going to isolate him. We know that we have to make a decision. We will talk to make sure that he has the disease, and then his cup, his plate and everything has to be apart, even a room if it's available so that he can sleep alone.There is no other way. It's hard, he cannot stay with us, they have to take him away."
Most informants explained that a person suffering from TB will be treated very "differently," and, in an extreme case, a few Somalis expressed fear of reprisal from imposing isolation on a friend or family member who has contracted the disease.
".for example, if they have TB, they won't tell you that they have TB.they want that you also have TB.because they know that they will be isolated and they become very vindictive. They want everyone to have it.He will trick you. when the people usually drink from a pot of water and everyone has a glass, they all drink and throw the remaining out. But the person with TB will drink, spit inside, and throw the remaining back in the pot.there's suspicion."
The social isolation can be so profound that the stigma of tuberculosis in Somali culture can be as severe as that of AIDS in Western culture. Many of the Somalis interviewed referred to TB as "the worst disease in the world." Persons with symptoms of tuberculosis may avoid seeking health care, or once the diagnosis is known, deny their illness to themselves or others. Children who are known or suspected to have TB will often not be allowed to go to school, which is increasingly the vehicle through which health education about diseases like TB is taught.
Another implication of this stigma for immigrants to the U.S. concerns contact investigations: a family sharing a house or an apartment with other families may be reluctant to share information with public health authorities to avoid disclosure of their tuberculosis infection status to their housemates and the community.
Skin Testing (PPD), BCG & Latent TB Infection (LTBI)
"Some believe that if it makes a big scar.it means that the medication went through really well."
PPD
Tuberculosis skin testing can be a confusing and sensitive topic. Many Somali immigrants had their first experience with skin testing in refugee camps. The repetition of skin testing in the U.S., and the sometimes-conflicting results (e.g. a negative test in the camp and a positive test in the U.S.) can raise suspicions of discrimination and hinder trust for future PPD attempts. Some believe the skin test is an immunization, while others understand the injection to be a source of infection. It is very rare for a Somali to have had experience with PPD skin testing (evaluation for LTBI) prior to immigrating to the USA.
BCG
There also exists a belief that all Somalis receive BCG (the vaccine given to protect against TB) as a child back home, and that BCG vaccination causes the PPD test to turn positive. 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.
LTBI
Specifically related to understanding a diagnosis of TB infection in the absence of symptoms, Somalis may have no prior reference point for understanding this diagnosis. 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; pre-asylum screening does not involve testing for latent TB infection. Some Somalis expressed the belief that a normal chest x-ray equals a wholly negative screening for 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; therefore, some informants expressed a reluctance to accept being infected with TB without having or personally perceiving symptoms associated with the illness understood to be TB. From a Somali's standpoint, if they are feeling healthy and 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.
Considering the Lived Experience of TB: Recommendations for Providers It is important to recognize that illness experience will differ based on an individual, regardless and inclusive of common cultural beliefs surrounding an infliction. Illnesses like TB may be seen as metaphors, taking in and exuding the realities of the social conditions under which an individual may have known symptoms at home. This extends to the realities of poverty, demoralization, the fear and misunderstanding of disease, as well as the guilt from a potentially "self-inflicted" illness like TB. An effective response to TB will take into account these social meanings as viable elements of an illness experience.
Informants often related some sort of illness narrative during the interview, either of themselves, someone they know with TB, or a story incorporating a local myth. This signals not only the strongly individual meanings associated with contracting TB, but also demonstrates how social values, beliefs and connections often mediate how the body is conceived and treated. Somalis living in the United States may struggle with self-definition based on a merging of the life they knew back in Somalia with the one they live here.
"What we Somalis, when we are patients, what we like is when we go to the doctor or any other clinic, what we want is that they are going to make a full check-up. I mean drawing blood, stools, urine, and x-rays, anything when we are new. We want to do all these check-ups. Once that it's clear that there's no disease, we'll be happy. If the doctor doesn't send us to make all the check-ups and decides only to tell us to take this medication, and that medication, it's a little bit, you know, we don't trust that."
Some recommendations for providers:
Legitimate the illness experience and try to increase the amount of time spent with the patient - often the seriousness with which a patient comes to consider TB is dependent upon the perceived seriousness of the provider.
Treat the diagnosis of tuberculosis with the same sensitivity and confidentiality you would reserve for sexually transmitted diseases and HIV; informants have cited TB as "the worst disease in the world."
Educate your patient about the curable nature of tuberculosis and emphasize the good health that will result from treating the disease, as well as the alleviation of personal and familial stigma that will result from such an improvement in health.
In regards to prescribing and taking medicine: some Somalis expressed a distrust of Western treatment and doctors because of changes in medications and dosages. In the focus group, these changes were often considered "experimentations," a trial in which the desired outcome was a result for a medical test, not the alleviation of sickness or suffering. A discussion of the reasons behind any such potential dosage or prescription change is recommended in advance.
Similarly, the topic of potential side effects (pain in the liver, jaundice, nausea, etc.) from taking medicines should be discussed in advance. This is important particularly for patients prescribed medicine for LTBI, as many informants expressed confusion over not feeling sick before consulting a provider and then experiencing side effects after.
Because LTBI is often a source of confusion for patients, a "start from scratch" approach is recommended. The provider and patient should discuss the differences between TB and LTBI where the importance and seriousness of both are communicated, and the following of a prescribed treatment are stressed.
Take time to discuss the social ramifications of the disease. If the patient is not infectious, reassure him or her that full social participation should continue as before the diagnosis. Family members should also be reassured that the patient can participate in meals and family activities without danger of infecting others.
Do, however, consider the social suffering and lived experience of TB as equally discomforting and disruptive as the routine taking of medication or scheduled doctor visits.
Research Summary, References and Further Reading
This brief research summary highlights a few qualitative and quantitative studies that sought to identify prevalence of TB, knowledge, attitudes and health seeking behaviors among Somali refugees and immigrant and providers, as well as incidence of decline and frequency of contagion relating to pre-and post-immigration. Using PubMed, article abstracts and other online research databases, the studies mentioned and cited below cover a range of geographical areas from Africa to the U.S. to Europe.
A 2002 CDC study of African immigrants in Seattle's King County found that of all the reported cases (n=486) of TB, 79 (16%) were among African immigrants and 67 (85%) of those were among Somali, Eritrea or Ethiopian immigrants. Kempainen et al. found that in 1997, incidence of tuberculosis in Minnesota's Somali population was estimated at 170 cases per 100,000 population compared with a national incidence of 20.5 per 100,000 among African Americans and 2.5 per 100,000 among whites. Ninety percent (90%) of Somali patients were < 40 years of age; 63% were diagnosed within 1 year of immigration, and > 90% had positive results with a purified protein derivative skin test.
A larger-scale study conducted by Lillebaek et al. (2002) addresses the assumption of a prompt decline in the incidence of TB in Somali immigrants during their first few years of residence in a country with low overall incidence. Their study, conducted in Denmark, finds that assumption to be less accurate, showing that the annual incidence of TB in Somali immigrants (n=619) declined only gradually during the first 7 years of residence, from an initial 2,000 per 100,000 to 700 per 100,000. Recommendations for this study match those of EthnoMed and highlight a need for control and prevention strategies that are tailored to the specific foreign-born populations at risk and focus on diminishing the incidence and prevalence of latent infection to reduce the pool of TB infection from which future cases of TB will emanate.
Kempainen's study found the 1997 incidence of tuberculosis in Minnesota's Somali population was estimated at 170 cases per 100,000 population compared with a national incidence of 20.5 per 100,000 among African Americans and 2.5 per 100,000 among whites. Ninety percent of Somali patients were < 40 years of age; 63% were diagnosed within 1 year of immigration, and > 90% had positive results with the purified protein derivative skin test.
A 2004 study in inner-city London conducted by Shetty et al. was aimed at specifically exploring the knowledge, attitude and practices (KAP) of Somali immigrants with TB (n=23), their family members (n=25) and the general Somali immigrant population (n=27). The results revealed that most were aware of the infectious nature of TB, but uncertain of other risk factors, and that belief in biomedicine for TB was clear with men having a significantly higher belief score than women. A closer look at the study, however, reveals that all those interviewed were educated, multilingual, and already aware of important health issues. This study, as well as those cited above and referenced below, point to a growing need to address the worries and misconceptions regarding basic TB contagion and infection of recent immigrants into the country.
The following list contains online and medicinal journals, newspaper articles, academic papers and practical tool sheets written in Somali for the use of all providers.
- Adair, R., Nwarneri, O., Barnes, N. (1999). Health care access for Somali refugees: Views of patients, doctors, nurses. American Journal of Health Behavior; 4, 286-293.
- Burke, H. (2001, March). Immunization and the Twin Cities Somali community: Findings from a focus group assessment. Retrieved October 20, 2004 from Minnesota Department of Health
- Centers for Disease Control. "Increase in African immigrants and refugees with tuberculosis--Seattle-King County, Washington, 1998-2001." Available: Centers for Disease Control Morbidity and Mortality Weekly Report
- Centers for Disease Control. Reported Tuberculosis in the United States, 2004. Atlanta, GA: U.S. Department of Health and Human Services, CDC, September 2005.
- Farah MG , Meyer HE , Selmer R , Heldal E , Bjune G . "Long-term risk of tuberculosis among immigrants in Norway." In International Journal of Epidemiology . 2005 Oct;34(5):1005-11.
- Fritz, MJ. "Somali refugee health screening in Hennepin County." In Minnesota Medicine . 1998 Apr ;81(4):43-7.
- Garow, Yusuf, M.D. How are We Doing in Controlling Tuberculosis? The Somaliland Times
- Kempainen, Robert MD; Karin Nelson, MD; David N. Williams, MB, ChB and Linda Hedemark, MD, FCCP. "Mycobacterium tuberculosis Disease in Somali Immigrants in Minnesota." Chest. 2001;119:176-180.
- Lillebaek, Troels, se B. Andersen, Asger Dirksen, Else Smith, Lene T. Skovgaard, and Axel Kok-Jensen. "Persistent High Incidence of Tuberculosis in Immigrants in a Low-Incidence Country." Emerging Infectious Diseases. 2002 July. Available: CDC
- Ohmans, Patricia. M.P.H. "Embracing Diversity." Available: Minnesota Medical Association .
Shetty, N., Shemko, M., & Abbas, A. (2004). Knowledge, attitudes and practices regarding tuberculosis among immigrants of Somalian ethnic origin in London: A cross-sectional study. Communicable Disease and Public Health. 7(1), 77-82.
- Taylor, Janelle. "Confronting `Culture' in Medicine's `Culture' of No Culture'". Academic Medicine. 2003; 78:555-559.
- 2000 WHO Somalia Health Update
- 2001 WHO qualitative study conducted to assess the knowledge and practice of Somali medical practitioners in the diagnosis and management of Tuberculosis.
- Patient Education Materials. From EthnoMed (Ethnomed)
- "Pills to Prevent TB for you and your Family!": translation of American Lung Association pamphlet includes English and Somali.
- "Tuberculosis: Get the Facts" CDC pamphlet, available in: Somali | English
- "Medication for Treatment of Tuberculosis".
Somali translation of a Seattle-King County Public Health pamphlet
- "The Tuberculosis Skin Test".
Information page in English and Somali translated by Harborview Medical Center/University of Washington
- Somali Audio Patient Education: Teaching Tool for Somalis about Tuberculosis and INH Treatment of Latent TB Infection
Somali audio recording, Somali and English written versions
The following materials are available on other websites, and have not been evaluated by EthnoMed:
- From Minnesota Department of Health: Active TB Disease.
English ---
Somali:
- TB Contact Investigations.
English ---
- Somali:
- Treatment for Latent TB (Tuberculosis) Infection (LTBI):
English ---
Somali:
Instruction for Collecting Sputum for TB (Tuberculosis) : English --- Somali:
TB (Tuberculosis) Skin Test (Mantoux): English ---
Somali:
TB and One Man's Story (Somali videotape)
- How to Order Videotape:
From Virginia Department of Health:
Do I Need a TB Skin Test? English: --- Somali:
- Just the Facts about BCG and TB: Englis --- Somali:
Stop TB Infection Before it Makes You Sick: English: -- Somali:
TB and HIV: A Dangerous Partnership. English: --- Somali:
TB Disease: You Need Treatment to Make You Well: English: --- Somali:
What is a TB Skin Test? English: --- Somali:
What You Should Know About Taking Tuberculosis Medicines: English: -- Somali:
From Australia:
TB Fact Sheet:
Somali: ---
TB treatment:
Somali:
From Healthy Roads Media:
All topics are available for download in 3 formats: movie with images, Somali text and audio; audio-only; written document with some images at: Somali
* "Do I Need a TB Test?"
* "TB & BCG"
* "STOP TB Infection Before It Makes You Sick"
* "TB DISEASE -You Need Treatment To Make You Well"
* "TB & HIV A Dangerous Partnership"
* "What is a TB test?"
* "What You Should Know About Taking Tuberculosis Medicines"
From the Refugee Health Information Network (Somali --- INH-Standing Between you & Tuberculosis (Somali pamphlet from the Florida Dept of Health )-- Somali
We would like to thank the Firland Foundation, Seattle WA, for their financial support of this project.
c 1995-2006; University of Washington. Harborview Medical Center.
Teaching Tool for Somalis about Tuberculosis and INH Treatment of Latent TB Infection
- Background:
- Provider Information
- Summary of Themes and TB Teaching Points
- Suggested Use of Audio in Clinical Setting
- Audio Recording
- Script (Somali and English)
1. Background:
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.
2. Provider Information
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
* A manuscript is being prepared to provide an in-depth discussion of the results of the data produced and analyzed from the focus groups...more on where to access this to come.
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.
1. Can you tell me what causes TB? How people get sick with TB?
2. Can you tell me how you would know that someone has TB? Can someone have TB without symptoms?
3. Can you tell me why a doctor might ask someone who is healthy to take medicine for TB?
4. 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.
3. 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 gentleman 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.
Somali Audio Recording
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. You can download a free multimedia player from Quick Time
4. Links to Script (Somali and English). TB Script in Somali ---
TB Script in English
c 1995-2006; University of Washington. Harborview Medical Center