Children with complex communication needs : The parents' perspective

Sammanfattning: The aim of this dissertation is to increase the understanding of how parents of children with severe and multiple disabilities and complex communication needs view their children’s communication and their communication aids. The participating children differ in age, in their developmental and communicative levels as well as in their socio-cultural backgrounds, but have in common that they all are using one or more modes of augmentative and alternative communication (AAC), involving no, low or high technology.Through a qualitative study, which is inspired by phenomenological and hermeneutic research traditions and based on interviews with the children’s parents, I aimed to get insight in how the phenomena of AAC and communication under challenging conditions per se are perceived by the parents. The transcribed interviews were interpreted and analyzed for common patterns in how parents experience their children’s communication and related challenges based on the children’s severe communication limitations and their needs for alternative communication modes.The results of the study indicate that despite the differences in the children’s abilities and limitations and family backgrounds there are common patterns regarding what parents perceive as the biggest challenges in communication with the child, regarding situations when communication between parents and child works best, and regarding the use of communication aids in and outside the family. While most parents are interested in supplying their child with a technical communication aid, these rarely seem to help bridge communicative deficits in areas which are essential for the parents, e.g., sharing events or expressing emotions.The outcomes of the interviews reveal the necessity to include parents to a great extent from the beginning throughout the course of intervention to better meet the challenges the parents of a child with complex communication needs are facing.