Listening to the Voices of Disability: Experiences of Caring for Children with Cerebral Palsy in a Rural South African Setting

SUMMARYSouth Africa's paediatric antiretroviral therapy (ART) programme is managed using a monitoring and evaluation tool known as TIER.Net. This electronic system has several advantages over paper-based systems, allowing profiling of the paediatric ART programme over time. We analysed anonymized TIER.Net data for HIV-infected children aged <15 years who had initiated ART in a rural district of South Africa between 2005 and 2014. We performed Kaplan–Meier survival analysis to assess outcomes over time. Records of 5461 children were available for analysis; 3593 (66%) children were retained in care. Losses from the programme were higher in children initiated on treatment in more recent years (P < 0·0001) and in children aged ≤1 year at treatment initiation (P < 0·0001). For children aged <3 years, abacavir was associated with a significantly higher rate of loss from the programme compared to stavudine (hazard ratio 1·9, P < 0·001). Viral load was suppressed in 48–52% of the cohort, with no significant change over the years (P = 0·398). Analysis of TIER.Net data over time provides enhanced insights into the performance of the paediatric ART programme and highlights interventions to improve programme performance.

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Professionals’ perceptions of pain communication of children with cerebral palsy in South African school settings

Developmental Medicine & Child Neurology ◽

10.1111/dmcn.85_13241 ◽

2016 ◽

Vol 58 ◽

pp. 40-40

Keyword(s):

Cerebral Palsy ◽

South African ◽

School Settings ◽

Pain Communication ◽

Children With Cerebral Palsy ◽

South African School

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How pain management for children with cerebral palsy in South African schools complies with up-to-date knowledge

African Journal of Disability ◽

10.4102/ajod.v8i0.575 ◽

2019 ◽

Vol 8 ◽

Author(s):

Ensa Johnson ◽

Stefan Nilsson ◽

Margareta Adolfsson

Keyword(s):

Cerebral Palsy ◽

Pain Management ◽

South African ◽

Scientific Knowledge ◽

Waiting Times ◽

System Level ◽

Evidence Based ◽

Special Educational Needs ◽

Published Evidence ◽

Children With Cerebral Palsy

Background: Pain in children with cerebral palsy (CP) has its sources in musculoskeletal problems that can influence learning in a school setting. Best pain management is essential for these children, but school staff may not keep up to date with the latest developments and interventions. Therefore, staff’s perceptions of beneficial strategies may not comply with contemporary scientific knowledge about effective evidence-based interventions.Objectives: This study investigated how pain management intervention for children with CP in South African schools complied with international scientific knowledge about evidence-based interventions. The intention was to provide support for an update of knowledge on both individual level (i.e. professionals) and system level (i.e. decision makers).Method: Five focus groups were conducted with staff members at five schools for children with special educational needs in South Africa. Manifest and latent content analyses of professional statements identified interventions reported as beneficial and related them to higher and lower levels of intervention evidence as reported at the time of data collection.Results: Most treatment strategies concerned motor functioning that fell within the framework of physiotherapists and occupational therapists. Access to orthopaedic expertise was limited, waiting times were long and medication for spasticity treatment was not offered.Conclusion: A discrepancy between published evidence and clinical practice for pain management in children with CP in South African school settings was noted. Suggestions for improved early intervention to identify children’s hips at risk through surveillance programmes; and orthopaedic management are proposed to prevent deformities and unnecessary suffering in South African children with CP.

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