Experiences of children and their caregivers affected by multidrug-resistant tuberculosis in Cape Town, South Africa

Background Approximately 30,000 children ( Methods We conducted a series of three in-depth qualitative interviews (48 interviews in total) with 17 children ( Findings Children had negative experiences throughout their MDR-TB journey, before their diagnosis, during the diagnostic process, through treatment, and beyond treatment completion. Children and their caregivers experienced delays in acquiring accurate and timely MDR-TB diagnosis; stating lack of symptom recognition and repeated referrals between health facilities. Once on treatment, caregivers experienced challenges administering MDR-TB medication as children resisted taking their medications due to poor palatability, tolerability, and negative side effects. Some caregivers reported that, beyond treatment, children experienced extended physical challenges such as shortness of breath. Additionally, MDR-TB diagnosis and treatment negatively affected family life, as caregivers adjusted household spending toward foods that facilitated ingestion and mitigated side effects. Caregivers also juggled between attending to their children's MDR-TB care and other household priorities. Conclusion There are multifactorial challenges experienced by children and their caregivers throughout their MDR-TB journey. Research is needed to develop holistic interventions for child-caregiver-centred psychosocial support to mitigate the negative impact of MDR-TB on children and their caregivers through prevention, earlier diagnosis, and simpler, child-friendly regimens. [1112,3].