"We can't handle things we don't know about": perceived neurorehabilitation challenges for Malawian paediatric cerebral malaria survivors

Boubour, Alexandra, Mboma, Sebastian, Vo, Tracy, Birbeck, Gretchen L, Seydel, Karl B, Mallewa, Macpherson, Chinguo, Dorothy, Gladstone, Melissa ORCID: 0000-0002-2579-9301, Mohamed, Suraya and Thakur, Kiran T (2020) "We can't handle things we don't know about": perceived neurorehabilitation challenges for Malawian paediatric cerebral malaria survivors. BMC PEDIATRICS, 20 (1). 503-.

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Official URL: http://dx.doi.org/10.1186/s12887-020-02405-1

Abstract

<h4>Background</h4>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.<h4>Methods</h4>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).<h4>Results</h4>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.<h4>Conclusions</h4>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.

Item Type:	Article
Uncontrolled Keywords:	Neurorehabilitation, Paediatric, Cerebral malaria, Qualitative, Malawi
Depositing User:	Symplectic Admin
Date Deposited:	09 Nov 2020 08:40
Last Modified:	18 Jan 2023 23:22
DOI:	10.1186/s12887-020-02405-1
Open Access URL:	https://bmcpediatr.biomedcentral.com/articles/10.1...
Related URLs:	Author Publisher
URI:	https://livrepository.liverpool.ac.uk/id/eprint/3106303