Experiences of children and their caregivers affected by multidrug-resistant tuberculosis in Cape Town, South Africa

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 the...

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Vydáno v:PloS one Ročník 20; číslo 5; s. e0323492
Hlavní autoři: Mcinziba, Abenathi, Wademan, Dillon T., Zimri, Klassina, Jacobs, Stephanie, Mcimeli, Khanyisa, Schaaf, H. Simon, Hesseling, Anneke C., Seddon, James A., Wilkinson, Thomas, Hoddinott, Graeme
Médium: Journal Article
Jazyk:angličtina
Vydáno: United States Public Library of Science 19.05.2025
Public Library of Science (PLoS)
Témata:
Adolescent
Adult
Ambulatory care
Antitubercular Agents - therapeutic use
Beliefs, opinions and attitudes
Care and treatment
Caregivers
Caregivers - psychology
Child
Child, Preschool
Children
Children & youth
Data collection
Diagnosis
Dyspnea
Ethics
Female
Health care facilities
Hospitals
Humans
Infant
Ingestion
Male
Medical diagnosis
Multidrug resistance
Palatability
Patient outcomes
Public opinion
Qualitative Research
Sick children
Side effects
South Africa - epidemiology
Tuberculosis
Tuberculosis, Multidrug-Resistant - diagnosis
Tuberculosis, Multidrug-Resistant - drug therapy
Tuberculosis, Multidrug-Resistant - epidemiology
Tuberculosis, Multidrug-Resistant - psychology
South Africa
Cape Town South Africa
ISSN:1932-6203, 1932-6203
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Shrnutí: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].
Bibliografie:ObjectType-Article-1
SourceType-Scholarly Journals-1
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ISSN:1932-6203
1932-6203
DOI:10.1371/journal.pone.0323492