Assessing the impact of multidrug-resistant tuberculosis in children: an exploratory qualitative study

Abstract

BackgroundWhile the prevalence of multidrug-resistant (MDR) tuberculosis (TB) is high among children in the Western Cape of South Africa, the psychosocial implications of treatment for children with MDR-TB remain poorly understood. We sought to explore how MDR-TB and its treatment impact children on an individual, familial, and social level.MethodsSemi-structured interviews were conducted with 20 children and caregivers purposively sampled from a prospective clinical cohort of children. The sample was stratified by age at the start of treatment (children >10 years, and 5-10 years). Caregiver proxy interviews were conducted with younger children, supplemented with child interviews; older children were interviewed directly, supplemented with caregiver proxy interviews. Data were analysed using grounded theory.ResultsFindings revealed pill volume and adverse effects produced significant physical, psychological and academic disturbances in children. Adverse effects related to the medication were important obstacles to treatment adherence. While there appear to be no long-lasting effects in younger children, a few older children showed evidence of persisting internalised stigma. Caregivers suffered important treatment-related financial and psychological costs. Community support, notably through the continued involvement of children in strong social networks, promoted resilience among children and their families.ConclusionsWe found that the current treatment regimen for childhood MDR-TB has significant psychological, academic, and financial impacts on children and their families. There is a need for psychosocial support of children and caregivers to mitigate the negative effects of community stigma, and to manage the stressors associated with chronic illness.Electronic supplementary materialThe online version of this article (doi:10.1186/1471-2334-14-426) contains supplementary material, which is available to authorized users.

Tuberculosis in Children

“…Anxiety and depression may be common, exacerbated by infection control and contact investigation procedures as well as stigma associated with the diagnosis. 52 These factors, combined with behavioral aspects, add to the vulnerabilities in this population and may lead to poor outcomes including challenges related to adherence and follow up. 53,54 …”

Childhood Tuberculosis

“…In addition to providing a proper drug regimen, the pediatrician should provide psychosocial support and assess for child and caretakers' risk factors that might lead to nonadherence. Pain management, hearing tests, and nutritional support are also important [94].…”

Conducting efficacy trials in children with MDR-TB: what is the rationale and how should they be done?

“…4,5 However, MDR-TB treatment in children remains long and disruptive for children and families, and is associated with significant toxicity. 6 Children, like adults, are frequently treated with a daily injectable medication for the first 4–6 months of their MDR-TB regimen and at least a quarter of these children develop hearing loss. 7 One reason that so few children are appropriately treated for MDR-TB is the reluctance of healthcare workers to treat children with the currently available long and toxic regimens, which also frequently require hospital admission.…”