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AAC to support communication between children and parents with a neurodegenerative disease

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A neurodegenerative disease affects the family and in particular the children. The speech language pathologist may be involved to support the individual with the disease but how about the child? The aim of this study was to explore communication disability in a parent from the child's perspective. What does it mean for the child when the mother or father cannot speak any longer? What is the role of AAC? Separate focus groups were carried out with nine families of children, adolescents and parents with and without Parkinson’s disease, Multiple Sclerosis and Huntington’s disease. Each focus group met twice over a period of four weeks to discuss themes such as the disease, health, home, school, peers, communication, and support. The children and adolescents talked about their experiences and the parents talked about their views about the children’s situation. Data were transcribed and analyzed using qualitative content analysis. The communication between the children and their parents has changed due to the disease and the children don’t talk as much with their parents as they would like to. The speech is difficult to understand and communication is negatively influenced by psychiatric and cognitive symptoms. The children get unsure and describe feeling guilt and responsibility. There is a lack of knowledge about communication and AAC around these families. Speech language pathologists and other professionals should get more involved and take parenthood into consideration while supporting the individual with AAC. Communication aids should include content stimulating daily child-parent talk. Education about communication should be provided.


Ulrika Ferm    
Sahlgrenska University Hospital, DART - Centre for AAC and AT

Stefan Nilsson    
University of Gothenburg, Sahlgrenska Academy, Institute of Health and Care Sciences

Margaretha Jenholt Nolbris    
University of Gothenburg, Sahlgrenska Academy, Institute of Health and Care Sciences

Annikki Jonsson    
University of Borås, Faculty of Caring Sciences

Petra Linnsand    
BArn som anhöriga, Dalheimers hus


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