Ensa Johnson

Eina! Ouch! Eish! Professionals’ Perceptions of How Children with Cerebral Palsy Communicate About Pain in South African School Settings: Implications for the use of AAC

Abstract Most children with severe cerebral palsy experience daily pain that affects their school performance. School professionals need to assess pain in these children, who may also have communication difficulties, in order to pay attention to the pain and support the children’s continued participation in school. In this study, South African school professionals’ perceptions of how they observed pain in children with cerebral palsy, how they questioned them about it and how the children communicated their pain back to them were investigated. Thirty-eight school professionals participated in five focus groups. Their statements were categorized using qualitative content analysis. From the results it became clear that professionals observed children’s pain communication through their bodily expressions, behavioral changes, and verbal and non-verbal messages. Augmentative and alternative communication (AAC) methods were rarely used. The necessity of considering pain-related vocabulary in a multilingual South African context, and of advocating for the use of AAC strategies to enable children with cerebral palsy to communicate their pain was highlighted in this study.

An exploration of pain-related vocabulary: implications for AAC use with children

Abstract Children with significant communication difficulties who experience pain need appropriate means to communicate their pain in order to receive appropriate treatment. Augmentative and alternative communication (AAC) strategies could be used to enable children to self-report pain. The aim of this research study was to identify the common vocabulary children with typical development use to describe physical pain experiences and develop and socially validate an appropriate pain-related vocabulary list for children who use or could benefit from using AAC. A sequential, exploratory, mixed-method design was employed. This paper focuses on the quantitative phase. A set of scenarios was developed to gather pain-related vocabulary appropriate for children aged 6;0–7;11 (years;months) and children aged 8;0–9;11, from 74 children, 61 parents, and 56 teachers. Some 629 pain-related words or phrases were suggested and then classified into seven categories. A composite list of the 84 most frequently occurring pain-related vocabulary items was compiled and socially validated by three adults who used AAC. They emphasized the need to individualize vocabulary and provided suggestions for vocabulary organization for display on any type of AAC system. Despite similarities in the categories of words offered by the various respondent groups, the differences underscore the importance of more than one perspective (particularly that of children and adults) in generating a comprehensive vocabulary list.

Adult Learners’ Perspectives on Their Engagement in a Hybrid Learning Postgraduate Programme

Abstract Student engagement is a prerequisite for successful learning. Due to the tremendous change in the use of information and communication technologies, the nature of this engagement has had to adapt to fit a hybrid approach of teaching and learning. In this qualitative study, three focus group discussions were conducted that aimed to investigate adult learners’ perspectives on their engagement in a hybrid learning postgraduate programme. Deductive content analysis was done of the transcribed data using Pittaway’s Engagement Framework. Main findings were that adult learners’ computer literacy skills impacted on their own self-efficacy towards their ability to study and use technology. Lecturers’ social engagement, especially their support to students, was also highlighted. Other factors, such as Internet access and power failures, hampered adult learners’ access to online activities. An adapted engagement framework for adult learners is proposed and should be taken into account when developing new online programmes for adult learners.

Pain management for children with cerebral palsy in school settings in two cultures: action and reaction approaches

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.

Model for vocabulary selection of sensitive topics : an example from pain-related vocabulary

ABSTRACT Vocabulary selection for graphic symbol‐based augmentative and alternative communication systems is important to enable persons with significant communication difficulties to express a variety of communication functions to indicate needs and wants, to develop social closeness, and to fulfill social etiquette. For persons who experience pain, abuse, bullying, or neglect, it is essential to be able to communicate about sensitive issues. However, published core vocabulary lists allow limited scope for communicating about sensitive topics, due mainly to the techniques employed to determine such lists (e.g., observations or recording of communication patterns of peers with typical development during fun‐based or daily activities). This article is based on the outcome of a study of childrens pain‐related vocabulary. Based on the study, we propose a model for selecting vocabulary on sensitive topics. The model consists of four phases: (1) using hypothetical scenarios; (2) considering different perspectives that may affect vocabulary selection; (3) involving direct stakeholders, and (4) customizing vocabulary.