Unmet needs: Inadequate social support for drug-resistant tuberculosis patients in Johannesburg, South Africa

Background: Drug-resistant tuberculosis (DR-TB) patients face multiple challenges during their treatment journey, including treatment side effects, poverty, discrimination, stigma, anxiety, unemployment and food insecurity. Consequently, some patients disengage from care. To mitigate these challenges, the World Health Organization (WHO) recommends social support, encompassing informational, companionship, emotional and material support. This study explores the social support received by DR-TB patients in Johannesburg, South Africa, in relation to the WHO recommendations. Methods: A qualitative exploratory approach was utilised, using semi-structured interviews (SSIs) with 13 cured former DR-TB patients who had been re-recruited from the previous phase of the study. Results: Nine participants of the 13 participants reported receiving inadequate information about DR-TB at diagnosis. However, at DR-TB facilities, 6 (N = 13) participants rated informational support as ‘good’ or ‘very good’, and 9 participants received some form of emotional support. Furthermore, 7 participants of the total of 13 participants lacked a treatment supporter during their treatment journey. Nutritional support was received by 10 participants at DR-TB facilities but not on a consistent basis. Conclusion: There is a significant gap in the provision of coordinated social support for DR-TB patients in Johannesburg, which undermines their ability to remain engaged in care. Contribution: This study adds to the discourse on social support for DR-TB patients during their treatment trajectory, highlighting the importance of addressing the psychosocial and socioeconomic challenges faced by these patients.