Many new tuberculosis cases are occurring in people born outside the UK. Culturally appropriate services need to be developed for the effective treatment of TB
Research in Somalia has identified the stigma and social isolation experienced by patients with tuberculosis. However, little is known about how TB is viewed by people from the Somali community living in the UK. To gain insight into how TB is understood within that community, a study was conducted using a participatory approach, which involved researchers working collaboratively with members of the community and health professionals. Most participants understood the signs and symptoms of TB, but many did not understand how it spreads and what its longer-term prognosis is. TB was perceived as stigmatising, although attitudes were changing. There is a need to increase understanding of TB among Somali and other minority ethnic groups who come from countries where the disease is stigmatised.
Citation: Gerrish K et al (2013) Knowledge of TB within the Somali community. Nursing Times; 109: 20, 22-23;
Author: Kate Gerrish is professor of nursing research at the University of Sheffield and Sheffield Teaching Hospitals Foundation Trust; Andy Naisby is TB specialist nurse at Sheffield Teaching Hospitals Foundation Trust; Mubarak Ismail is research assistant at Sheffield Hallam University.
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Tuberculosis is a serious but treatable disease affecting a third of the world’s population (World Health Organization, 2010). The number of people with TB in the UK has increased by more than 25% in the past decade with 73% of new TB cases occurring in people born outside the UK. The third largest group of people who are diagnosed with TB in the UK are those born in Somalia (Health Protection Agency, 2011).
TB is often associated with a degree of stigma. This stigma is heavily influenced by fear of the illness and is generally highest in populations who have difficulty accessing treatment.
Research in Somalia has looked at the effect stigma has on the population. It has been shown that people with TB may isolate themselves to avoid infecting others or may hide the fact that they have the disease to reduce the risk of being shunned. Additionally, patients may experience social isolation from family and be required to eat and sleep separately. They may also be avoided by friends (Baral et al, 2007). People who migrate from countries where TB is stigmatised in such a way are likely to continue to share some of these attitudes (Johnson, 2006); however, we know very little about how Somali people living in the UK view the disease.
The research set out to gain insight into how TB is understood within the Somali community and how these perceptions may influence Somali people’s response to the disease. The project came from a shared concern among the Somali community and health professionals in Sheffield about the need to provide culturally appropriate services for the effective diagnosis and treatment of TB. The project was based on the premise that TB is a social and not just a physical illness, so listening to, and engaging the Somali community was vital to working together to reduce its impact.
A participatory research approach was used involving researchers working collaboratively with members of the Somali community and health professionals. The study began with broad ranging interviews with 10 community leaders to gain an understanding of the Somali community. This freely given support from community leaders also helped in subsequent stages of the study. Four bilingual community researchers carried out a total of 24 semi-structured interviews with community members recruited through their social networks. The interviews explored the individual’s knowledge and attitudes about TB as well as their views on how it was viewed in the wider Somali community.
Focus groups were undertaken with four groups of women and four groups of men (56 people in total). Vignettes loosely based on real life TB scenarios were used as a prompt for discussion and to explore cultural norms and values.
Fourteen people were interviewed who were either being treated for TB or had recently completed TB treatment. These interviews aimed to find out about their experiences of TB, including the strategies they used to manage their condition and the roles of family and friends.
Interviews were undertaken in Somali or English depending on the participant’s preference. Participants were also able to choose whether they were interviewed by a male or female researcher. The data was analysed using the framework approach (Ritchie et al, 2003).
Knowledge of TB varied within the community. Community leaders generally had a good understanding of symptoms, transmission, prognosis and treatment, but accurately predicted that understanding in the community at large would be partial. Most Somali people correctly viewed TB as a treatable disease but there was a belief that the disease may not be fully cured even after treatment. This was linked to a false belief that TB was a hereditary disease that can be passed from generation to generation.
A common lack of understanding of infection risk and transmission means that people in the community may be unnecessarily concerned about their own risk from contact with people who have TB. Many people were aware of common symptoms of pulmonary TB (infectious) but there was much less awareness of non-pulmonary TB (non-infectious), which accounts for almost half of all notified cases. Many respondents falsely identified sharing eating and drinking utensils as an infection risk.
Although community leaders thought that TB was becoming less stigmatised within the Somali community, the view was that stigma remained an issue. People who contracted TB were perceived by the wider community to experience a loss of self-worth and a sense of shame. A belief that TB could not be fully cured meant that friends may be reluctant to engage socially, even when a patient had finished treatment.
Although the general community view was that people diagnosed with TB would be reluctant to make their diagnosis known to others, TB patients indicated that their actual experiences have been less stigmatising than community perceptions. Most patients had been wary about making their illness known, but when they shared the information with family and friends they had received support. However, some reported a sense of isolation and a change in people’s response to them following diagnosis. For this reason many people were wary of the diagnosis being shared outside of their immediate family and were concerned of breaches in confidentiality within the community, especially around interpreter use.
Implications for practice
Although attitudes towards TB within the Somali community are changing, there is still a degree of stigma. Inaccurate knowledge about TB together with the fear of infection and social isolation influences how Somali people respond to the disease. The findings point to the importance of increasing an understanding of TB within the Somali community and ensuring that health professionals have an understanding of how the disease is perceived among Somali and other minority ethnic groups who have migrated from countries where TB is stigmatised.
A community that is knowledgeable about TB is in a strong position to avoid contracting the disease. Greater understanding of TB within the Somali community will require strategies that challenge deeply held beliefs about how the disease is spread and the long-term prognosis. Drawing upon community resources, for example, community leaders and patients who have personal experience of TB, may help to convey important and culturally appropriate messages. Health professionals are well placed to support community leaders and Somali health workers in taking this forward. It is also important that culturally appropriate materials are developed that are accessible to Somali people, especially those who do not speak English and cannot read Somali or English. The Somali community has a strong oral tradition and so communicating key messages in stories or poetry may be more effective than factual leaflets.
Timely diagnosis of TB is essential in reducing the spread of the disease and in improving health outcomes for those affected. Effective TB control in the Somali community depends in part on services being responsive to the needs of Somali patients. To achieve this, nurses require an understanding of the socio-cultural factors that influence health beliefs and behaviours among Somalis and how to overcome language barriers. Continuing professional development for nurses and other health practitioners, who work with Somali people, should provide opportunities to gain insight into how TB is understood and, in particular, how the stigma associated with TB may influence how patients respond to the disease.
- In Somalia, the stigma surrounding tuberculosis has resulted in people with the disease becoming socially isolated
- Many Somali people hold misconceptions about how TB is spread and its longer-term implications for recovery
- Stigma influences the extent to which people disclose their diagnosis to others
- Nurses need to understand how the disease is perceived within the Somali community
- Community nurses should use the assessment process to gain insight into how individual patients view TB
Baral SC et al (2007) Causes of stigma and discrimination associated with tuberculosis in Nepal: a qualitative study. BMC Public Health; 7: 211. doi: 10.11866/1471-2458-7-211
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Johnson A (2006) Beliefs and Barriers Related to Understanding TB Amongst Vulnerable Groups in South East London. London: South East London Health Protection Agency.
Ritchie J et al (2003) Carrying out qualitative analysis. In: Ritchie J, Lewis J (eds) Qualitative Research Practice: a Guide for Social Science Students and Researchers. London: Sage.
World Health Organisation (2010) Global Tuberculosis Control 2010. Geneva: World Health Organisation.