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

Abstract

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.

Provision of Decentralized TB Care Services: A Detect–Treat–Prevent Strategy for Children and Adolescents Affected by TB

“…Even when treatment is ambulatory, families are unable to travel away from the location of the hospital for the long duration of treatment, thereby disrupting their social lives [19]. In instances where children and adolescents are hospitalized for prolonged periods away from their families, there can be catastrophic financial impacts for families [20], as well as psychosocial and health repercussions on the child or adolescent [21,22]. Disruption of parent-child bonding and cessation of breast feeding for young infants; missing out on school and social isolation in older children and adolescents can all have long-lasting impacts.…”