Experiences of the diagnosis and management of tuberculosis: a focused ethnography of Somali patients and healthcare professionals in the UK

Abstract Aim To explore experiences of the diagnosis and management of tuberculosis from the perspective of Somali patients and healthcare professionals involved in their care. Background The Somali population has the third highest incidence of tuberculosis occurring in persons born outside the UK. Tuberculosis is a disease with sociocultural as well as physical consequences. Nurses should understand how the disease is experienced by people from different ethnic backgrounds to implement strategies for prevention and management of tuberculosis. Design A focused ethnography. Method Individual interviews with 14 Somali patients and 18 healthcare professionals with experience of providing care to Somalis were undertaken in 2008-2009. Interviews explored the patient experience from onset of symptoms to completion of treatment. Data were analysed using Framework approach. Findings Despite presenting in primary care early, patients experienced diagnostic delays due to low clinical suspicion of tuberculosis among general practitioners. Although patients reported felt and enacted stigma, it did not adversely affect concordance with treatment. Patients were reticent about sharing their diagnosis among wider networks due to perceived stigma. Psychological support from families and specialist nurses was valued highly. Healthcare professionals perceived that stigmatization of tuberculosis was diminishing among Somalis leading to improved management of tuberculosis. Patients and healthcare professionals raised concerns about the longer term physical and psychosocial implications of tuberculosis once treatment was completed. Conclusion Nurses have a role in promoting early presentation, timely diagnosis, and treatment adherence through supporting Somali patients and raising awareness of the disease among primary care practitioners.