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BMC Pediatrics
Published in: BMC Pediatrics 1/2020

01-12-2020 | Malaria | Research article

“We can’t handle things we don’t know about”: perceived neurorehabilitation challenges for Malawian paediatric cerebral malaria survivors

Authors: Alexandra Boubour, Sebastian Mboma, Tracy Võ, Gretchen L. Birbeck, Karl B. Seydel, Macpherson Mallewa, Dorothy Chinguo, Melissa Gladstone, Suraya Mohamed, Kiran T. Thakur

Published in: BMC Pediatrics | Issue 1/2020

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Abstract

Background

We sought to identify perceptions of neurorehabilitation challenges for paediatric cerebral malaria (CM) survivors post-hospital discharge at Queen Elizabeth Central Hospital (QECH) in Blantyre, Malawi.

Methods

An exploratory approach was used to qualitatively investigate the perceived neurorehabilitation challenges for paediatric CM survivors. Data were collected through semi-structured in-depth interviews (IDIs) and focus group discussions (FGDs). Eighteen data-gathering sessions were conducted with 38 total participants, including 3 FGDs with 23 primary caregivers, 11 IDIs with healthcare workers at QECH, and 4 IDIs with community-based rehabilitation workers (CRWs).

Results

FGDs revealed that caregivers lack important knowledge about CM and fear recurrence of CM in their children. Post-CM children and families experience substantial stigma and sociocultural barriers to integrating into their community and accessing neurorehabilitative care. At a community-level, rehabilitation infrastructure, including trained staff, equipment, and programmes, is extremely limited. Rehabilitation services are inequitably accessible, and community-based rehabilitation remains largely unavailable.

Conclusions

There is an urgent need to establish further training of rehabilitation personnel at all levels and to build accessible rehabilitation infrastructure in Malawi for post-CM patients. Additional work is required to expand this study across multiple regions for a holistic understanding of neurorehabilitation needs.
Appendix
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Metadata
Title
“We can’t handle things we don’t know about”: perceived neurorehabilitation challenges for Malawian paediatric cerebral malaria survivors
Authors
Alexandra Boubour
Sebastian Mboma
Tracy Võ
Gretchen L. Birbeck
Karl B. Seydel
Macpherson Mallewa
Dorothy Chinguo
Melissa Gladstone
Suraya Mohamed
Kiran T. Thakur
Publication date
01-12-2020
Publisher
BioMed Central
Published in
BMC Pediatrics / Issue 1/2020
Electronic ISSN: 1471-2431
DOI
https://doi.org/10.1186/s12887-020-02405-1

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