Hopelessness as a basis for tuberculosis diagnostic delay in the Arkhangelsk region: a grounded theory study

BACKGROUND: Data about delayed tuberculosis diagnosis in Northern Russia are scarce yet such knowledge could enhance the care of tuberculosis. The Arkhangelsk region is situated in the north of Russia, where the population is more than one million residents. The aim of the study was to understand factors influencing diagnostic delay among patients with tuberculosis in the Arkhangelsk region and to develop a theoretical model in order to explain diagnostic delay from the patients’ perspectives. METHODS: Twenty-three patients who had experienced diagnostic delay of tuberculosis were interviewed in Arkhangelsk. Using a qualitative approach, we conducted focus-group discussions for data gathering using Grounded Theory with the Paradigm Model to analyse the phenomenon of diagnostic delay. RESULTS: The study resulted in a theoretical model of the pathway of delay of tuberculosis diagnosis in the Arkhangelsk region in answer to the question: “Why and how do patients in the Arkhangelsk region delay tuberculosis diagnosis?” The model included categories of causal conditions, context and intervening conditions, action/interaction strategies, and consequences. The causal condition and main concern of the patients was that they were overpowered by hopelessness. Patients blamed policy, the administrative system, and doctors for their unfortunate life circumstances. This was accompanied by avoidance of health care, denial of their own health situations, and self-treatment. Only a deadly threat was a sufficient motivator for some patients to seek medical help. “Being overpowered by hopelessness” was identified as the core category that affected their self-esteem and influenced their entire lives, including family, work and social relations, and appeared even stronger in association with alcohol use. This category reflected the passive position of many patients in this situation, including their feelings of inability to change anything in their lives, to obtain employment, or to qualify for disability benefits. CONCLUSION: The main contributing factor to unsuccessful health-seeking behaviour for patients with tuberculosis was identified as “being overpowered by hopelessness.” This should be taken into consideration when creating any preventive programs and diagnostic algorithms aimed at increasing knowledge about TB, improving the health system, decreasing alcohol consumption and reducing the poverty of the people in Arkhangelsk.