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

Background: South Africa adopted the decentralised Drug Resistant Tuberculosis (DR-TB) care model in 2011 with a view of improving clinical outcomes.

Aim: 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.

Method: 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.

Results: 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.

Conclusion: 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.