Mcinziba Abenathi, Wademan Dillon T, Zimri Klassina, Jacobs Stephanie, Mcimeli Khanyisa, Schaaf H Simon, Hesseling Anneke C, Seddon James A, Wilkinson Thomas, Hoddinott Graeme
Desmond Tutu TB Centre, Department of Paediatrics and Child Health, Faculty of Medicine and Health Sciences, Stellenbosch University, Cape Town, South Africa.
Department of Infectious Disease, Imperial College London, London, United Kingdom.
PLoS One. 2025 May 19;20(5):e0323492. doi: 10.1371/journal.pone.0323492. eCollection 2025.
Approximately 30,000 children (<15 years) develop multidrug-resistant (MDR) tuberculosis (TB) each year. MDR-TB severely impacts the lives of children and their families, yet data exploring their experiences are limited. We describe the experiences of children routinely treated for MDR-TB and their caregivers throughout their MDR-TB journeys in Cape Town, South Africa.
We conducted a series of three in-depth qualitative interviews (48 interviews in total) with 17 children (<15 years) and/or their caregivers between April 2021 and September 2021. We selected children who had been routinely treated for MDR-TB between 2018 and 2021. We applied a deductive, thematic analysis to case summaries with illustrative examples from interviews.
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.
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].
每年约有3万名15岁以下儿童患上耐多药结核病（MDR-TB）。耐多药结核病严重影响儿童及其家庭的生活，但探索他们经历的数据有限。我们描述了在南非开普敦，接受耐多药结核病常规治疗的儿童及其照顾者在整个耐多药结核病治疗过程中的经历。
2021年4月至2021年9月期间，我们对17名15岁以下儿童和/或其照顾者进行了一系列三次深入的定性访谈（共48次访谈）。我们选择了2018年至2021年期间接受耐多药结核病常规治疗的儿童。我们对案例摘要进行了演绎式主题分析，并引用访谈中的实例。
儿童在整个耐多药结核病治疗过程中，从诊断前、诊断过程中、治疗期间到治疗结束后都有负面经历。儿童及其照顾者在获得准确及时的耐多药结核病诊断方面经历了延误；表示缺乏症状识别以及在医疗机构之间反复转诊。一旦开始治疗，照顾者在给儿童服用耐多药结核病药物时遇到挑战，因为儿童由于药物口感差、耐受性差和副作用而抗拒服药。一些照顾者报告说，治疗结束后，儿童仍面临诸如呼吸急促等长期身体问题。此外，耐多药结核病的诊断和治疗对家庭生活产生了负面影响，因为照顾者调整家庭开支，购买有助于服药和减轻副作用的食物。照顾者还在照顾孩子的耐多药结核病和其他家庭事务之间疲于应对。
儿童及其照顾者在整个耐多药结核病治疗过程中面临多方面的挑战。需要开展研究，制定以儿童-照顾者为中心的全面心理社会支持干预措施，通过预防、早期诊断以及更简单、对儿童友好的治疗方案，减轻耐多药结核病对儿童及其照顾者的负面影响。[1112,3]
