Aims Rehabilitation services in Malawi are limited despite the burden of paediatric neurodisability secondary to conditions such as cerebral malaria, meningitis, encephalitis and traumatic brain injury. This hospital-based study aims to explore the perceptions and experiences of parent/carers and health-workers caring for children with neurodisability following brain injury, in order to inform the development of a capacity-building programme to improve rehabilitation services.
Methods The study was conducted in the Paediatrics department of an urban tertiary hospital in Malawi and utilised qualitative methodology. Sampling was purposive with recruitment via Paediatrics staff. Fourteen interviews were completed with parents/carers of children affected by recent brain injuries, and ten interviews and four focus-groups with health-workers. Analysis involved a thematic framework approach.
Results Health-workers With limited resources, management of acute conditions is prioritised over rehabilitation. Lack of confidence, knowledge, and a sense of ‘there’s nothing we can do’ hampers health-workers’ rehabilitation efforts, despite many suggesting that simple things make a difference. Bias exists towards managing physical disability rather than impairments of cognition, speech or behaviour. Concerns were raised about the wider impact of neurodisability on the family, including the risk of child abuse and neglect. Counselling, including information giving, was identified as a priority. Health-workers recognised that effective rehabilitation could not be achieved unless parents/carers first understood and accepted their child’s condition.
Parents/Carers Reports of poor communication between health-workers and parents/carers were common. Parents often had not understood or been adequately informed about investigations, diagnosis or management of their child’s condition. This contributed to unrealistic expectations about prognosis, misunderstanding about underlying causes, and lack of continued rehabilitation in the community. The burden of caring for a child with neurodisability, and the financial and opportunity costs this entails was strongly evident. Main issues were lack of mobility in their child, feeding, continence and speech difficulties. Religion was a key source of support.
Conclusion Limited resources, lack of health-worker training, bias towards physical disability, and poor communication, are key factors inhibiting rehabilitation of children with brain injury in a hospital-setting in Malawi. A programme to improve rehabilitation services should address these issues as priority.