Lived experiences of patients and families with decentralised drug-resistant tuberculosis care in the Eastern Cape, South Africa.

Abstract

South Africa adopted the decentralised Drug Resistant Tuberculosis (DR-TB) care model in 2011 with a view of improving clinical outcomes. This study explores the experiences and perceptions of patients and family members on the effectiveness of a decentralised community DR-TB care model in the Oliver Reginald Kaizana (OR) Tambo district municipality of the Eastern Cape, South Africa. In this phenomenological qualitative research design, a semi-structured interview with prompts was conducted on 30 participants (15 patients and 15 family members). Framework approach to thematic content analysis was adopted for qualitative data analysis. Four themes emerged from the patients' interviews: adequate knowledge of DR-TB and its transmission, fear of death and isolation, long travel distances, and exorbitant transportation cost. A 'ready' health system influenced the effectiveness of community DR-TB management, while interviews with family members yielded five themes: misconceptions about DR-TB, rapid diagnosis and adherence counselling, long travel distances, activated healthcare workers, and little role of traditional healer. A perceived effectiveness of a community DR-TB care model in the OR Tambo district was demonstrated through the quality and comprehensiveness of care rendered by a 'ready' health system with activated health care workers (HCWs) who provided robust support and adequate knowledge of DR-TB and its treatment/side effects. However, misconceptions about DR-TB, long travel distances to treatment facilities, high cost of transportation and stigma remained challenging for most patients and family members.Contribution: This study provides insight into the lived experiences of a decentralised community DR-TB care model in the OR Tambo district in 2020.