“I Would Have to Hold Him and Pin Him Down”: Caregiver Experiences of Administering Drug‑Resistant Tuberculosis Treatment to Children in KwaZulu‑Natal, South Africa

Background: The lack of child‑friendly, second‑line drug‑resistant tuberculosis (DR‑TB) medication in South Africa often leads to the use of adult formulations, which are not always suitable for children. Caregiver experiences in preparing and administering this treatment and the impact on parent–child relationships are poorly represented in the literature.

Objective(s): To assess parental acceptability regarding the preparation and administration of DR‑TB medications for young children, utilizing Wademan’s acceptability framework.

Methods: Seven caregivers of eight children who had been diagnosed with DR‑TB between June 2019 and February 2022 and initiated treatment at a referral hospital in KwaZulu‑Natal participated in the study. Individual in‑depth interviews with three caregivers and one focus group discussion with four caregivers were used to gather data, which were analyzed using part of the acceptability framework for TB in children developed by Wademan et al. [1].

Findings: Despite challenges, caregivers were adept at navigating DR‑TB medication regimens, highlighting their critical role in inventive preparation methods to enhance palatability and strategic administration practices for children. Adult medications were adapted where necessary, and caregivers employed various techniques to ensure adherence. The acceptability of treatment was affected by medication palatability, preparation and administration, appeal and side effects (usability), and the interface between caregivers and the healthcare system (integration). Staying engaged in care threatened not only family resources but also the parent–child relationship. The daily struggle was between children often resisting medication and caregivers needing to find ways for the children to take medication, for instance, by begging, reasoning with, threatening, and forcing them.

Conclusions: Despite all formulations having adverse effects, caregivers and children preferred child‑friendly formulations due to their ease of preparation and administration. Child‑friendly formulations of DR‑TB medications should be widely available and be the standard of care in all settings.