Proximal processes of children with profound multiple disabilities

Abstract: In this thesis four empirical studies dealt with children with profound multiple disabilities and their parents with regard to: (a) how parents perceived interaction with their children (b) how observed child/parent interaction was linked to behavior style of the children as perceived by the parents (c) how parents of children with profound multiple disabilities perceived child/parent interaction and behavior style of their children in comparison to parents to children without disabilities matched for communicative ability and age respectively, and, (d) how social networks and family accommodations were linked to child/parent interaction and child behavior style over time for these families according to parental appraisals. The results in study I showed that child/parent interaction occurred through out the day and constituted of mutual experience and joy. There were two processes in interaction: monitoring interaction and successful interaction. Study II found hypo- and hyper dominated behaviour style of the children to influence interaction differently. The parents were found to be experts on their children in monitoring interaction to achieve more frequent periods of successful interaction. Study III found few differences in wishes about ideal interaction between parents of children with profound multiple disabilities and parents of typically developing children. Study IV showed that the children were communicative dependent on their parents; there were few complete overlaps between the children’s and the family’s social networks; and although family accommodations were child-driven, sustainability of family life evolved around other factors. There was a “contradiction” in results for the whole thesis: child/parent interaction occurred through out ordinary everyday life and constituted of mutual experience and joy versus the children’s communicative dependency and the distance found between social networks of families and children and child/parent interaction.