Building communication interventions for children with severe disabilities on cultural resources: an action research enquiry

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2015

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University of Cape Town

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In South Africa, children with severe disabilities are often the most neglected in terms of planning and providing appropriate interventions. For those with severe communication disabilities, an additional lack is in the area of the basic human right to meaningful interactions and communication. Sustainable strategies to provide opportunities for basic communicative participation of these children are urgently sought. The focus of this study, grounded in the transformative paradigm, was on culturally determined processes that can increase and enrich the communicative participation of children with severe communication disabilities in an isiXhosa language and cultural context. The aims of the study were: * to identify culturally determined non-verbal and pragmatic elements of social interaction in an isiXhosa language context. * to identify culturally appreciative strategies to support the communicative participation of children with severe communication impairments in this context. The participants were 44 mothers and/or primary carers of children with severe cerebral palsy from an under-resourced peri-urban isiXhosa speaking context in the Western Cape. The method comprised an action research journey with iterative cycles of collaborative action, reflection and subsequent further planning with participants. Data collection included action reflection group sessions, reflective dialogues with the group facilitators, and participant observations. All data was qualitative. Data analysis included a process of in-group collaborative analysis and verification followed by reflective dialogues with the group facilitators and interpretive thematic content analysis. The findings included 12 action learning outcomes, from which two main themes were identified, directly responding to the two main aims of the study. Findings that were considered new were framed as three theses: Thesis 1: Relationships are the context and motivation for communicative participation: the social inclusion and non-ostracism of mothers need to be prioritised in order for them and their children to enjoy communicative participation. Thesis 2: The 'Middle Ground' is a valuable positionality in implementing transformative action learning as an intervention approach. Thesis 3: There is a need to reframe culture as a resource in supporting the communication development of children with severe communication disabilities. In conclusion, implications for clinical practice, for training, for policy planning and implementation and for further research are discussed. Practical suggestions for application by mothers and others caring for children with severe communication disabilities in similar contexts are included.
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