Caregiver-child separation during tuberculosis hospitalisation: a qualitative study in South Africa

There are an estimated 32,000 incident cases of multidrug-resistant tuberculosis in children globally each year. Extended hospitalisation is often required to ensure optimal adherence to the complex multidrug-resistant tuberculosis treatment regimen. Hospitalisation usually results in caregiver-child separation which is known to cause psychological difficulties in children. We explored caregivers' and health workers' perceptions of the effects of caregiver-child separation during hospitalisation for tuberculosis in the Western Cape. We conducted semi-structured interviews with health workers (n = 7) and caregivers (n = 14) of children who were receiving multidrug-resistant tuberculosis treatment. All interviews were audio-recorded, transcribed, and translated. We used thematic analysis to organise and interpret the data. We identified three themes: (1) multidrug-resistant tuberculosis treatment was a distressing experience for children, caregivers, and health workers; (2) children's behavioural states during and post-hospitalisation (e.g., crying, aggression, hyperactivity, and withdrawal) were suggestive of their distress; and (3) caregivers and health workers used strategies, such as deception, threat, and the prioritisation of biomedical health over psychological health as a means to manage their own as well as the children's distress. This article presents novel research on the dynamics involved in caregiver-child separation as a result of multidrug-resistant tuberculosis treatment in South Africa. We highlight that the challenges of caregiver-child separation intersected with predisposing factors related to the social adversity that families affected by childhood tuberculosis experience. Delivery models that facilitate outpatient community-based care should be prioritised and a more structured form of psychological support should be implemented for those who still require hospitalisation.