‘Complex’ but coping: experience of symptoms of tuberculosis and health care seeking behaviours - a qualitative interview study of urban risk groups, London, UK

BACKGROUND: Tuberculosis awareness, grounded in social cognition models of health care seeking behaviour, relies on the ability of individuals to recognise symptoms, assess their risk and access health care (passive case finding). There is scant published research into the health actions of ‘hard-to-reach’ groups with tuberculosis, who represent approximately 17% of the London TB caseload. This study aimed to analyse patients’ knowledge of tuberculosis, their experiences of symptoms and their health care seeking behaviours. METHODS: Qualitative interviews were conducted with 17 participants, predominantly homeless and attending a major tuberculosis centre in London, UK. Most had complex medical and social needs including drug and alcohol use or immigration problems affecting entitlement to social welfare. Analytical frameworks aimed to reflect the role of broader social structures in shaping individual health actions. RESULTS: Although participants demonstrated some knowledge of tuberculosis their awareness of personal risk was low. Symptoms commonly associated with tuberculosis were either not recognised or were attributed to other causes for which participants would not ordinarily seek health care. Many accessed health care by chance and, for some, for health concerns other than tuberculosis. CONCLUSIONS: Health education, based on increasing awareness of symptoms, may play a limited role in tuberculosis care for populations with complex health and social needs. The findings support the intensification of outreach initiatives to identify groups at risk of tuberculosis and the development of structured care pathways which support people into prompt diagnosis and treatment.