Stigma relating to tuberculosis infection prevention and control implementation in rural health facilities in South Africa — a qualitative study outlining opportunities for mitigation
van der Westhuizen H-M., Ehrlich R., Somdyala N., Greenhalgh T., Tonkin-Crine S., Butler CC.
Background: Tuberculosis (TB) is a stigmatised disease with intersectional associations with poverty, HIV, transmission risk and mortality. The use of visible TB infection prevention and control (IPC) measures, such as masks or isolation, can contribute to stigma. Methods: To explore stigma in this condition, we conducted in-depth individual interviews with 18 health workers and 15 patients in the rural Eastern Cape of South Africa using a semi-structured interview guide and narrative approach. We used reflexive thematic analysis guided by line-by-line coding. We then interpreted these key findings using Link and Phelan’s theoretical model of stigma, related this to stigma mitigation recommendations from participants and identified levels of intervention with the Health Stigma and Discrimination Framework. Results: Participants shared narratives of how TB IPC measures can contribute to stigma, with some describing feeling ‘less than human’. We found TB IPC measures sometimes exacerbated stigma, for example through introducing physical isolation that became prolonged or through a mask marking the person out as being ill with TB. In this context, stigma emerged from the narrow definition of what mask-wearing symbolises, in contrast with broader uses of masks as a preventative measure. Patient and health workers had contrasting perspectives on the implications of TB IPC-related stigma, with patients focussing on communal benefit, while health workers focussed on the negative impact on the health worker-patient relationship. Participant recommendations to mitigate TB IPC-related stigma included comprehensive information on TB IPC measures, respectful communication between health workers and patients, shifting the focus of TB IPC messages to communal safety (which could draw on ubuntu, a humanist framework) and using universal IPC precautions instead of measures targeted at someone with infectious TB. Conclusions: Health facilities may unwittingly perpetuate stigma through TB IPC implementation, but they also have the potential to reduce it. Evoking ‘ubuntu’ as an African humanist conceptual framework could provide a novel perspective to guide future TB IPC stigma mitigation interventions, including policy changes to universal IPC precautions.