Children with Down syndrome in mainstream schools : Conditions influencing participation

The overall aim of this thesis was to identify and explore conditions influencing school participation of children with Down syndrome in mainstream elementary schools. This thesis comprises four studies, and the research was conducted in Norway. Study I aimed at describing home and community functional performance in 5-year-old children with Down syndrome, to get insight into the level of performance and variability prior to school entry. In study II the aim was to investigate the relation between functional performance skills of children with Down syndrome and the age of their entry into mainstream elementary education. In study I and II, data was collected on self-care, mobility and social function with structured interviews with parents using the PEDI, and analyzed with descriptive, non-parametric statistics. Study III aimed to explore peer interaction in the context of school activities in mainstream classes. Interaction between the pupils with Down syndrome with their peers was studied in order to identify enabling conditions. Study IV aimed to explore and describe peer interaction in school activities as experienced by teachers and teachers’ assistants, and to identify and explore how they facilitated interaction. Studies III and IV used qualitative interviews and observations that were analyzed with constant comparative method followed by interpretations (study IV). The findings of study I provided baseline information about self-care, mobility and social function tasks, indicating a wide range of performance. Mobility appeared as a domain of relative independent performance, and assistance was needed in self-care and social function. Management of bladder and bowel control appeared to be a problem at group level, thus parents expressed a worry regarding school entry. Speech and communication difficulties were found, with higher score on comprehension compared to functional expression. Study II identified functional performance skills in relation to children who got a one year postponement of their school entry, which was the case for 40% of the sample. Conditions relating to postponed school entry were found to be lack of bladder and bowel control, low scores in functional comprehension, expressive communication and problem solving. Study III identified different patterns of peer interaction in school activities. Instances of equal interaction were found, characterized by the interacting pupils’ shared understanding of the activity and tasks within the performance range of those who participated. In unequal interaction, when the activity interest was “shared enough” but tasks too difficult for the pupils with Down syndrome, peers were found to act as a more skilled partner. Peers modified or adjusted activities and tasks, or own behaviour in various ways that in turn enabled participation. Findings of study IV revealed support strategies of class staff in order to facilitate peer interaction in school activities. The support strategies seemed to be grounded in their experience of peer interaction as challenging because of diversity among the pupils. Their strategies concerned planning, arranging of activities in groups, paring the pupil with Down syndrome to more skilled pupils, educating peers to behave supportive, and teachers’ assistants’ provision of individual support to the pupils with Down syndrome by the role of the “supported ego”. Taken together, the findings of this thesis provide knowledge about conditions influencing school participation of children with Down syndrome in mainstream elementary schools. Findings provide knowledge of performance which may be helpful in planning the children’s school entry, knowledge about enabling strategies of peers in order to create opportunities for participation in activities, insight into the planning and organizing of teachers in order to create an including social learning environments, and knowledge about the role of the “supported ego”, compensating for the cognitive difficulties of the pupils with Down syndrome in order to facilitate social participation with peers.