Margareta Adolfsson1,2,3, Ensa Johnson4, Stefan Nilsson1,5. 1. a CHILD , Jönköping University , Jönköping , Sweden. 2. b School of Education and Communication , Jönköping University , Jönköping , Sweden. 3. c Swedish Institute of Disability Research , Jönköping University , Jönköping , Sweden. 4. d Centre for Augmentative and Alternative Communication , University of Pretoria , Pretoria , South Africa. 5. e Institute of Health and Care Sciences , University of Gothenburg , Gothenburg , Sweden.
Abstract
BACKGROUND: Children with cerebral palsy (CP) face particular challenges, e.g. daily pain that threaten their participation in school activities. This study focuses on how teachers, personal assistants, and clinicians in two countries with different cultural prerequisites, Sweden and South Africa, manage the pain of children in school settings. METHOD: Participants' statements collected in focus groups were analysed using a directed qualitative content analysis framed by a Frequency of attendance-Intensity of involvement model, which was modified into a Knowing-Doing model. RESULTS: Findings indicated that pain management focused more on children's attendance in the classroom than on their involvement, and a difference between countries in terms of action-versus-reaction approaches. Swedish participants reported action strategies to prevent pain whereas South African participants primarily discussed interventions when observing a child in pain. CONCLUSION: Differences might be due to school- and healthcare systems. To provide effective support when children with CP are in pain in school settings, an action-and-reaction approach would be optimal and the use of alternative and augmentative communication strategies would help to communicate children's pain. As prevention of pain is desired, structured surveillance and treatment programs are recommended along with trustful collaboration with parents and access to "hands-on" pain management when needed. Implications for rehabilitation • When providing support, hands-on interventions should be supplemented by structured preventive programs and routines for parent collaboration (action-and-reaction approach). • When regulating support, Sweden and South Africa can learn from each other; ○ In Sweden, the implementation of a prevention program has been successful. ○ In South Africa, the possibilities giving support directly when pain in children is observed have been beneficial.
BACKGROUND:Children with cerebral palsy (CP) face particular challenges, e.g. daily pain that threaten their participation in school activities. This study focuses on how teachers, personal assistants, and clinicians in two countries with different cultural prerequisites, Sweden and South Africa, manage the pain of children in school settings. METHOD:Participants' statements collected in focus groups were analysed using a directed qualitative content analysis framed by a Frequency of attendance-Intensity of involvement model, which was modified into a Knowing-Doing model. RESULTS: Findings indicated that pain management focused more on children's attendance in the classroom than on their involvement, and a difference between countries in terms of action-versus-reaction approaches. Swedish participants reported action strategies to prevent pain whereas South African participants primarily discussed interventions when observing a child in pain. CONCLUSION: Differences might be due to school- and healthcare systems. To provide effective support when children with CP are in pain in school settings, an action-and-reaction approach would be optimal and the use of alternative and augmentative communication strategies would help to communicate children's pain. As prevention of pain is desired, structured surveillance and treatment programs are recommended along with trustful collaboration with parents and access to "hands-on" pain management when needed. Implications for rehabilitation • When providing support, hands-on interventions should be supplemented by structured preventive programs and routines for parent collaboration (action-and-reaction approach). • When regulating support, Sweden and South Africa can learn from each other; ○ In Sweden, the implementation of a prevention program has been successful. ○ In South Africa, the possibilities giving support directly when pain in children is observed have been beneficial.