The meaning and consequences of tuberculosis among Somali people in the United Kingdom

Aim. To ascertain the socio-cultural meaning and consequences of tuberculosis among people of Somali origin living in the UK. Background. In countries where treatment has not been readily available, tuberculosis has become highly stigmatized. Research in Somalia has documented the stigma and social isolation associated with tuberculosis which acts as a powerful deterrent to sufferers acknowledging their illness. The Somali community in the UK is diverse and dynamic: little is known about how tuberculosis is understood, or how stigma is articulated and experienced post-migration. Design. A focused ethnography was undertaken. Method. A total of 48 individual interviews were undertaken in 2008–2009 with community leaders, Somali community members and tuberculosis patients to explore the social meaning of tuberculosis and perceived consequences of the disease. Eight focus groups were undertaken involving 56 participants. Vignettes concerning tuberculosis were used to prompt discussion of community norms and socio-cultural constructions of tuberculosis. Data were analysed using the ‘Framework’ approach. Findings. Most participants were familiar with tuberculosis, its characteristics and treatment. However, many participants held misconceptions about how the disease spread and its prognosis. Tuberculosis was perceived as a stigmatizing disease. Somalis with tuberculosis were considered likely to experience felt and enacted stigma with fear of discrimination in the form of social isolation influencing the extent to which people with tuberculosis disclosed their condition. Conclusion. Nurses should understand the socio-cultural meaning and consequences of tuberculosis for Somalis to educate the community through public health initiatives and support patients and their families.