Boubour Alexandra, Mboma Sebastian, Võ Tracy, Birbeck Gretchen L, Seydel Karl B, Mallewa Macpherson, Chinguo Dorothy, Gladstone Melissa, Mohamed Suraya, Thakur Kiran T
Department of Neurology, Columbia University Irving Medical Center, New York, NY, USA.
Blantyre Malaria Project, University of Malawi College of Medicine, Queen Elizabeth Central Hospital, Blantyre, Malawi.
BMC Pediatr. 2020 Nov 3;20(1):503. doi: 10.1186/s12887-020-02405-1.
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.
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).
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.
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.
我们试图确定马拉维布兰太尔伊丽莎白女王中央医院（QECH）出院后的小儿脑型疟疾（CM）幸存者对神经康复挑战的看法。
采用探索性方法对小儿CM幸存者感知到的神经康复挑战进行定性调查。通过半结构化深度访谈（IDI）和焦点小组讨论（FGD）收集数据。共进行了18次数据收集会议，共有38名参与者，包括与23名主要照顾者进行的3次FGD、与QECH医护人员进行的11次IDI，以及与社区康复工作者（CRW）进行的4次IDI。
FGD显示照顾者缺乏关于CM的重要知识，并且担心孩子再次感染CM。患CM后的儿童及其家庭在融入社区和获得神经康复护理方面面临巨大的耻辱感和社会文化障碍。在社区层面，包括训练有素的工作人员、设备和项目在内的康复基础设施极其有限。康复服务获取不公平，基于社区的康复基本上无法提供。
迫切需要在马拉维对各级康复人员进行进一步培训，并为患CM后的患者建立可及的康复基础设施。需要开展更多工作，在多个地区扩展这项研究，以全面了解神经康复需求。
