Tackling TB together : a community participatory study of the socio-cultural factors influencing an understanding of TB within the Somali community in Sheffield

This report presents the main findings from a study which sought to gain insight into the sociocultural influences on how TB is perceived within the Somali community and how these perspectives affect the prevention, diagnosis and treatment of the disease. The study also gained an understanding of healthcare practitioners’ perceptions of TB among the Somali community and their experiences of providing TB services to Somalis. A community participatory research approach was used which involved Somali community researchers and healthcare practitioners working in partnership with university researchers to design and conduct the research with the support of a community-based project advisory group. Data were collected by means of interviews and focus groups with Somali community leaders, patients suffering from TB, members of the wider Somali community, healthcare practitioners providing TB services and primary care practitioners. The findings identified a general awareness of TB among the Somali community in terms of the signs and symptoms of pulmonary TB, its treatment and prognosis. There was less understanding of nonpulmonary TB among Somali participants and some healthcare practitioners. Many Somalis lacked detailed understanding of how the disease was spread. Established community beliefs, for example that TB was a hereditary disease, or that it could be acquired by sharing eating utensils proved difficult for healthcare practitioners to challenge. Somali people spoke of how TB was perceived to be stigmatised within the Somali community. Whereas a person suffering from TB would generally share the diagnosis with their immediate family, concerns remained about the possibility of being ostracised by members of the wider community if knowledge of the disease became more widespread. This carried implications for contact tracing. However, attitudes towards TB were changing. Community leaders emphasised that as people became more knowledgeable about TB then the stigma would diminish but it was acknowledged that deeply held beliefs about the causes and consequences of TB would take some time to change. A number of barriers that hinder Somali people accessing TB services were identified. Some, like stigma, are embedded in cultural beliefs or are linked to socio-cultural activities such as chewing khat. A lack of trust and confidence in healthcare providers, especially some GPs arose from the protracted time it often took to diagnose TB. Healthcare practitioners lack of understanding of the Somali community and language barriers also hindered the uptake of primary care services. Several avenues through which culturally appropriate strategies targeted at minimising the spread of the disease, ensuring timely diagnosis and effective management of TB were identified. These are captured in the recommendations arising from the study which identify the need for a more proactive approach to raising awareness of TB within the Somali community and among primary care practitioners. Interpretations of TB are culturally bound and in order for TB services the better to meet the needs of the Somali community there is a need to develop greater awareness among healthcare practitioners of the needs of Somali patients and overcome linguistic barriers through improved access to interpreting services, especially in primary care.