Carin Andrews1, Angelina Kakooza-Mwesige1,2, Rita Almeida3, Stefan Swartling Peterson4,5,6, Fred Wabwire-Mangen7, Ann-Christin Eliasson1,8, Hans Forssberg1,8. 1. Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden. 2. Department of Pediatrics and Child Health, Makerere University, Kampala, Uganda. 3. Department of Neuroscience, Karolinska Institutet, Stockholm, Sweden. 4. Department of Public Health, Karolinska Institutet, Stockholm, Sweden. 5. Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden. 6. UNICEF, New York, NY, USA. 7. School of Public Health, Makerere University College of Health Sciences, Kampala, Uganda. 8. Astrid Lindgren Children's Hospital, Stockholm, Sweden.
Abstract
AIM: To describe the functional limitations and associated impairments of children with cerebral palsy (CP) in rural Uganda, and care-seeking behaviour and access to assistive devices and education. METHOD: Ninety-seven children with CP (42 females, 55 males; age range 2-17y) were identified in a three-stage population-based screening with subsequent medical examinations and functional assessments. Information on school and access to care was collected using questionnaires. The data were compared with Swedish and Australian cohorts of children with CP. We used the χ2 test and linear regression models to analyse differences between groups. RESULTS: Younger children were more severely impaired than older children. Two-fifths of the children had severe impairments in communication, about half had intellectual disability, and one third had seizures. Of 37 non-walking children, three had wheelchairs and none had walkers. No children had assistive devices for hearing, seeing, or communication. Care-seeking was low relating to lack of knowledge, insufficient finances, and 'lost hope'. One-third of the children attended school. Ugandan children exhibited lower developmental trajectories of mobility and self-care than a Swedish cohort. INTERPRETATION: The needs for children with CP in rural Uganda are not met, illustrated by low care-seeking, low access to assistive devices, and low school attendance. A lack of rehabilitation and stimulation probably contribute to the poor development of mobility and self-care skills. There is a need to develop and enhance locally available and affordable interventions for children with CP in Uganda. WHAT THIS PAPER ADDS: Development of mobility and self-care skills is lower in Ugandan than Swedish children with cerebral palsy (CP). Older children in Uganda with CP are less impaired than younger children. Untreated seizures and impairments of communication and intellect are common. Access to health services, assistive devices, and education is low. Caregivers lack knowledge and finances to seek care and often lose hope of their child improving.
AIM: To describe the functional limitations and associated impairments of children with cerebral palsy (CP) in rural Uganda, and care-seeking behaviour and access to assistive devices and education. METHOD: Ninety-seven children with CP (42 females, 55 males; age range 2-17y) were identified in a three-stage population-based screening with subsequent medical examinations and functional assessments. Information on school and access to care was collected using questionnaires. The data were compared with Swedish and Australian cohorts of children with CP. We used the χ2 test and linear regression models to analyse differences between groups. RESULTS: Younger children were more severely impaired than older children. Two-fifths of the children had severe impairments in communication, about half had intellectual disability, and one third had seizures. Of 37 non-walking children, three had wheelchairs and none had walkers. No children had assistive devices for hearing, seeing, or communication. Care-seeking was low relating to lack of knowledge, insufficient finances, and 'lost hope'. One-third of the children attended school. Ugandan children exhibited lower developmental trajectories of mobility and self-care than a Swedish cohort. INTERPRETATION: The needs for children with CP in rural Uganda are not met, illustrated by low care-seeking, low access to assistive devices, and low school attendance. A lack of rehabilitation and stimulation probably contribute to the poor development of mobility and self-care skills. There is a need to develop and enhance locally available and affordable interventions for children with CP in Uganda. WHAT THIS PAPER ADDS: Development of mobility and self-care skills is lower in Ugandan than Swedish children with cerebral palsy (CP). Older children in Uganda with CP are less impaired than younger children. Untreated seizures and impairments of communication and intellect are common. Access to health services, assistive devices, and education is low. Caregivers lack knowledge and finances to seek care and often lose hope of their child improving.
Authors: Lukia H Namaganda; Rita Almeida; Dan Kajungu; Fred Wabwire-Mangen; Stefan Peterson; Carin Andrews; Ann Christin Eliasson; Angelina Kakooza-Mwesige; Hans Forssberg Journal: PLoS One Date: 2020-12-29 Impact factor: 3.240