1. Rehabilitation of Children with Neurodisability following Brain Injury in Malawi: Perspectives of Families and Health-workers Amelia Holme 1, Macpherson Mallewa 2, Dorothy Chinguo 2, Chawanangwa Mahebere-Chirambo 3, Melissa Gladstone 4 1. Centre for Child & Adolescent Health, School of Social & Community Medicine, University of Bristol, UK 2.Queen Elizabeth Central Hospital, College of Medicine, Blantyre, Malawi 3.Malawi Liverpool Wellcome Trust, Blantyre, Malawi 4.Department of Women’s & Children’s Health, Institute of Translational Medicine, University of Liverpool, UK 3) Results Key Findings from Health Workers Rehabilitation is not prioritised in the context of limited resources. Along with multiple other barriers (see Fig 3), this feeds into a sense of hopelessness and loss of interest in children with neurodisability, as HWs often feel unable/unsure how to help them…. ‘because of the disability which is there, as a society, we lose, maybe I don’t know whether I can say, interest to the patient... because we don’t know what really can we do’. However, paradoxically, many HWs also suggested ideas of ‘simple things that you think they will not make a difference, but they can.’ Focus on physical disability: A bias towards physical disability was a recurring theme, and the recognition/management of impairments of cognition/speech/behaviour less often discussed. However some HWs did recognise that certain sequelae may be less obvious at time of discharge – therefore all children need thorough assessment and follow up after suffering brain injury/infection. Risk of neglect and abuse of children with disabilities: Countless concerns were raised by HWs about the care of these children...‘they are just being kept in the home…they are locked there and people go out to work. They don’t care for them’. Good counselling is the first priority: HWs felt that little can be achieved in terms of rehabilitation, until parents/carers first understand & accept their child’s condition. Empowering families & communities with knowledge/Health education and patient rights: HWs suggested an important part of their role should focus on empowering families with knowledge that will equip them to look after their child e.g. teaching on basic care activities, feeding, medications, handling & positioning; ‘If parents they had such information, I believe they would be able to be proud mothers, to help their kids…’ This should be accompanied by education & raised awareness in the wider community, as well as advocating the importance of patient rights (particularly the right to information). Key Findings from Parents/Carers Poor communication: Reports of poor communication between HWs and PCs were common. Almost unanimously, parents felt they had not understood/been adequately informed about investigations, diagnosis or management of their child’s condition. Perceptions of cause and prognosis: Low levels of health literacy amongst PCs and lack of clear explanation from HWs led to misunderstanding about the cause of neurodisability and the likely prognosis. Parents were often unsure why brain conditions such as meningitis could cause problems with walking, and the cause of the disability in their child was often instead ascribed to the presenting symptoms e.g. fainting, cough. Faith/religion was a strong influence… ‘I know anytime now the Lord will bless him and his limbs will be back to how they were.’ Burden of care: The huge burden of caring for a child with neurodisability following brain injury, and the actual and opportunity cost this entails, was strongly evident. The main problems being immobility (not walking/sitting/using hands), feeding and continence difficulties. Mothers seemed to shoulder the burden of care: ‘as a parent, his mother, I have accepted to help my child in everything.’ 3) Results Key Findings from Health Workers Rehabilitation is not prioritised in the context of limited resources. Along with multiple other barriers (see Fig 3), this feeds into a sense of hopelessness and loss of interest in children with neurodisability, as HWs often feel unable/unsure how to help them…. ‘because of the disability which is there, as a society, we lose, maybe I don’t know whether I can say, interest to the patient... because we don’t know what really can we do’. However, paradoxically, many HWs also suggested ideas of ‘simple things that you think they will not make a difference, but they can.’ Focus on physical disability: A bias towards physical disability was a recurring theme, and the recognition/management of impairments of cognition/speech/behaviour less often discussed. However some HWs did recognise that certain sequelae may be less obvious at time of discharge – therefore all children need thorough assessment and follow up after suffering brain injury/infection. Risk of neglect and abuse of children with disabilities: Countless concerns were raised by HWs about the care of these children...‘they are just being kept in the home…they are locked there and people go out to work. They don’t care for them’. Good counselling is the first priority: HWs felt that little can be achieved in terms of rehabilitation, until parents/carers first understand & accept their child’s condition. Empowering families & communities with knowledge/Health education and patient rights: HWs suggested an important part of their role should focus on empowering families with knowledge that will equip them to look after their child e.g. teaching on basic care activities, feeding, medications, handling & positioning; ‘If parents they had such information, I believe they would be able to be proud mothers, to help their kids…’ This should be accompanied by education & raised awareness in the wider community, as well as advocating the importance of patient rights (particularly the right to information). Key Findings from Parents/Carers Poor communication: Reports of poor communication between HWs and PCs were common. Almost unanimously, parents felt they had not understood/been adequately informed about investigations, diagnosis or management of their child’s condition. Perceptions of cause and prognosis: Low levels of health literacy amongst PCs and lack of clear explanation from HWs led to misunderstanding about the cause of neurodisability and the likely prognosis. Parents were often unsure why brain conditions such as meningitis could cause problems with walking, and the cause of the disability in their child was often instead ascribed to the presenting symptoms e.g. fainting, cough. Faith/religion was a strong influence… ‘I know anytime now the Lord will bless him and his limbs will be back to how they were.’ Burden of care: The huge burden of caring for a child with neurodisability following brain injury, and the actual and opportunity cost this entails, was strongly evident. The main problems being immobility (not walking/sitting/using hands), feeding and continence difficulties. Mothers seemed to shoulder the burden of care: ‘as a parent, his mother, I have accepted to help my child in everything.’ 1) Background Paediatric neurodisability occurs commonly in Malawi secondary to brain injury or infections such as cerebral malaria and meningitis, but rehabilitation services are limited Aim: To explore the perceptions and experiences of families and health workers caring for children with neurodisability secondary to brain injury/infection at the Queen Elizabeth Central Hospital (QECH) in Blantyre, Malawi Objectives: To explore the patient journey and existing rehabilitation practices, the needs and priorities of parents/carers and health workers caring for children with neurodisability, and the current barriers to rehabilitation Purpose: To inform the development of a capacity-building programme to improve rehabilitation services & train health workers about paediatric neurodisability 1) Background Paediatric neurodisability occurs commonly in Malawi secondary to brain injury or infections such as cerebral malaria and meningitis, but rehabilitation services are limited Aim: To explore the perceptions and experiences of families and health workers caring for children with neurodisability secondary to brain injury/infection at the Queen Elizabeth Central Hospital (QECH) in Blantyre, Malawi Objectives: To explore the patient journey and existing rehabilitation practices, the needs and priorities of parents/carers and health workers caring for children with neurodisability, and the current barriers to rehabilitation Purpose: To inform the development of a capacity-building programme to improve rehabilitation services & train health workers about paediatric neurodisability 2) Methods Qualitative interview & focus group study set in the Paediatrics department, QECH, Blantyre, Malawi Purposive sampling with recruitment via QECH paediatrics staff 14 Parent/Carer (PC) interviews (6 inpatients & 8 outpatients, 12 mothers & 2 fathers, most children admitted with brain infection/aquire brain injury less than 3 months previously) 10 Health Worker (HW) interviews (nurses, rehab technicians, occupational therapy, speech & language, doctors, clinical officers) 4 Health Worker focus groups (1. Nurses from paediatric wards 2. Palliative care staff 3. Nurses who had previously attended neurodisability training session 4. Other health workers - rehabilitation technicians, playleaders, specialist hydrocephalus nurse) Interviews & focus groups were conducted in Chichewa/English by Malawian research assistant, recorded, transcribed and translated. A thematic approach to analysis was conducted. 2) Methods Qualitative interview & focus group study set in the Paediatrics department, QECH, Blantyre, Malawi Purposive sampling with recruitment via QECH paediatrics staff 14 Parent/Carer (PC) interviews (6 inpatients & 8 outpatients, 12 mothers & 2 fathers, most children admitted with brain infection/aquire brain injury less than 3 months previously) 10 Health Worker (HW) interviews (nurses, rehab technicians, occupational therapy, speech & language, doctors, clinical officers) 4 Health Worker focus groups (1. Nurses from paediatric wards 2. Palliative care staff 3. Nurses who had previously attended neurodisability training session 4. Other health workers - rehabilitation technicians, playleaders, specialist hydrocephalus nurse) Interviews & focus groups were conducted in Chichewa/English by Malawian research assistant, recorded, transcribed and translated. A thematic approach to analysis was conducted. Fig 1: QECH, Blantyre Barriers to Rehabilitation Time Resources – staff, equipment, space, funding Knowledge & training Missed opportunity Poor commun- ication Lack of & poor access to community services Health worker attitudes Health worker confidence & ownership Parents lack of acceptance/ understand- ing Focus on acute illness Focus on physical disability Stigma Lack of standard procedure /practice Fig 2. (Right) Rehabilitation equipment - Wooden corner chair & standing frame Fig 3. (Below) Barriers to rehabilitation raised by health workers & parents ameliaholme@doctors.org.ukameliaholme@doctors.org.uk Acknowledgements: Sir Halley Stewart Trust, University of Liverpool, QECH Paediatrics department, Malawi Liverpool Wellcome Trust Qualitative team Fig 4. (Left) Umodzi Palliative care team & OT Dorothy Chinguo on a home visit to a family of a child with neurodisability 4) Conclusions…. Parents/carers of children with neurodisability following brain injury/infection in Malawi report a huge burden of care and multiple actual and opportunity costs. Limited resources, lack of health worker knowledge & training, stigma, a focus on physical disability, lack of awareness about patient rights, and poor communication between health workers and parents/carers are key factors inhibiting rehabilitation of children in a hospital setting in Malawi. Families and communities need to be supported in accepting and understanding the child’s condition, and empowered with skills and knowledge to care for them and undertake rehabilitation activities. A program to improve rehabilitation services and train health workers in paediatric neurodisability should address these factors as a priority.