“We can’t handle things we don’t know about”: perceived neurorehabilitation challenges for Malawian paediatric cerebral malaria survivors
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 per...
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doaj-988e7a605d4e4f3dbcdd3b8d762770ff2020-11-25T04:06:52ZengBMCBMC Pediatrics1471-24312020-11-0120111610.1186/s12887-020-02405-1“We can’t handle things we don’t know about”: perceived neurorehabilitation challenges for Malawian paediatric cerebral malaria survivorsAlexandra Boubour0Sebastian Mboma1Tracy Võ2Gretchen L. Birbeck3Karl B. Seydel4Macpherson Mallewa5Dorothy Chinguo6Melissa Gladstone7Suraya Mohamed8Kiran T. Thakur9Department of Neurology, Columbia University Irving Medical CenterBlantyre Malaria Project, University of Malawi College of Medicine, Queen Elizabeth Central HospitalDepartment of Sociomedical Sciences, Columbia University Mailman School of Public HealthEpilepsy Division, Department of Neurology, University of Rochester Medical CenterBlantyre Malaria Project, University of Malawi College of Medicine, Queen Elizabeth Central HospitalMalawi-Liverpool Wellcome Trust Clinical Research ProgrammeDepartment of Physiotherapy and Occupational Therapy, Queen Elizabeth Central HospitalDepartment of Women and Children’s Health, Institute of Translational Medicine, University of LiverpoolSchool of Public Health, University of the Western CapeDivision of Critical Care & Hospitalist Neurology, Columbia University Irving Medical CenterAbstract 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.http://link.springer.com/article/10.1186/s12887-020-02405-1NeurorehabilitationPaediatricCerebral malariaQualitativeMalawi |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
Alexandra Boubour Sebastian Mboma Tracy Võ Gretchen L. Birbeck Karl B. Seydel Macpherson Mallewa Dorothy Chinguo Melissa Gladstone Suraya Mohamed Kiran T. Thakur |
spellingShingle |
Alexandra Boubour Sebastian Mboma Tracy Võ Gretchen L. Birbeck Karl B. Seydel Macpherson Mallewa Dorothy Chinguo Melissa Gladstone Suraya Mohamed Kiran T. Thakur “We can’t handle things we don’t know about”: perceived neurorehabilitation challenges for Malawian paediatric cerebral malaria survivors BMC Pediatrics Neurorehabilitation Paediatric Cerebral malaria Qualitative Malawi |
author_facet |
Alexandra Boubour Sebastian Mboma Tracy Võ Gretchen L. Birbeck Karl B. Seydel Macpherson Mallewa Dorothy Chinguo Melissa Gladstone Suraya Mohamed Kiran T. Thakur |
author_sort |
Alexandra Boubour |
title |
“We can’t handle things we don’t know about”: perceived neurorehabilitation challenges for Malawian paediatric cerebral malaria survivors |
title_short |
“We can’t handle things we don’t know about”: perceived neurorehabilitation challenges for Malawian paediatric cerebral malaria survivors |
title_full |
“We can’t handle things we don’t know about”: perceived neurorehabilitation challenges for Malawian paediatric cerebral malaria survivors |
title_fullStr |
“We can’t handle things we don’t know about”: perceived neurorehabilitation challenges for Malawian paediatric cerebral malaria survivors |
title_full_unstemmed |
“We can’t handle things we don’t know about”: perceived neurorehabilitation challenges for Malawian paediatric cerebral malaria survivors |
title_sort |
“we can’t handle things we don’t know about”: perceived neurorehabilitation challenges for malawian paediatric cerebral malaria survivors |
publisher |
BMC |
series |
BMC Pediatrics |
issn |
1471-2431 |
publishDate |
2020-11-01 |
description |
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. |
topic |
Neurorehabilitation Paediatric Cerebral malaria Qualitative Malawi |
url |
http://link.springer.com/article/10.1186/s12887-020-02405-1 |
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