Humiliation or care? A qualitative study of patients' and health professionals' experiences with tuberculosis treatment in Norway

Abstract

Aim: Directly observed treatment (DOT) has been implemented globally as a strategy in treatment of tuberculosis. Studies from high-endemic settings show that DOT involves social and economical burdens for patients, but little is known about experiences with practicing DOT in low-endemic settings. The present study explores patients' and health professionals' views and experiences with DOT in Norway.

Method: In-depth interviews were conducted with 22 patients originating from Somalia and Ethiopia and with 20 health professionals. Data from the interviews were analysed using systematic text condensation.

Findings: We found that there was little room for patients to negotiate whether or not to consent to the organization of treatment (DOT). Patients told that it was difficult to question the way treatment was organized, as they got the impression that there was no other way of gaining access to medication. Both patients and health professionals reported that persuasion based on authority and subtle threats was used as means to facilitate patients' acceptance of DOT. A majority of patients experienced DOT as humiliating and discriminating, while some had the experience of being cared for. Patients who attended school or had occupational obligations reported high social costs related to the treatment. Patients with positive experiences told that they had been given an opportunity to negotiate flexible treatment schedules and emphasized the importance of continuity among health professionals. Health professionals had divergent views and practices. Some argued that patients should be treated equally, while others argued for an individualized and flexible approach.

Conclusion: The practice of DOT reflects societal power structures that influence the clinical interactions between health professionals and patients. To avoid experiences of disempowerment and humiliation among patients, treatment and care should be organized in a way that safeguards patients' right to consent to treatment and that allows patients to negotiate an individualized treatment schedule.