\u201cWe can\u2019t handle things we don\u2019t know about\u201d: perceived neurorehabilitation challenges for Malawian paediatric cerebral malaria survivors

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

doi:10.1186/s12887-020-02405-1

Abstract

BackgroundWe 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.MethodsAn 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).ResultsFGDs 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.ConclusionsThere 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.

Highlights

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
In resource-limited settings, there is a paucity of neurorehabilitation in practice nor clear guidelines to inform rehabilitation in the post-CM period [11,12,13]
This study aimed to identify perceived neurorehabilitation challenges for paediatric CM survivors post-hospital discharge from a specialised unit at QECH in Blantyre, Malawi

Summary

Introduction

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. Neurorehabilitation is effective to improve longitudinal prognosis and mitigate neurological sequelae in post-CM children [7, 10, 11]. The use of traditional and computer-assisted neurorehabilitation has been shown to improve baseline attention, memory, and executive functioning in post-CM children in Uganda; this may not be feasible in Malawi due to cost and technological limitations in rural regions [11, 12]. Community-based rehabilitation has existed in Malawi since 1987; training programmes are remain limited [18]. Due to the lack of funding allocated to these public programmes, most neurorehabilitation infrastructure – including community-based programmes – are exist privately through nongovernmental organizations (NGOs), are costly for those seeking care, and unsustainable given their external funding (through NGOs and charitable organizations rather than through the national health system)

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