WHAT MOTIVATES PARENTS OF CHILDREN WITH DOWN SYNDROME TO PARTICIPATE IN RESEARCH: A FOCUS GROUP ANALYSIS

The object of this thesis is the analysis of the answers of parents of children with Down Syndrome, to the question "What are the motivations that drive you or drive you away from research?". The investigated data are the answers that six groups of parents provided during one Focus-Groups. The texts were analyzed using Atlas.ti, software for both qualitative and quantitative analysis, taking only the responses to the questions of interest and overlooking the others. These Focus-Groups were conducted by two different Facilitators: one for the three conducted in Italy and one for the three conducted in America. This study is part of a larger project aimed at creating a manual for the enhancement of executive functions in preschool children with Down Syndrome. In order to analyze the transcripts, those in Italian were previously translated into English and checked by a mother-tongue speaker, then only the answers inherent to the two research questions were selected; the parts concerning the facilitators were removed, and in case of yes/no answers, the question, in brief, was indicated. Two types of analysis were conducted. A quantitative one: investigating the frequency of keywords, which were then clustered into different thematic units. And a qualitative one, which on the one hand compares the single Focus-Groups among themselves to investigate how socio-demographic variables influence the answers; and on the other hand, the comparison is made between the Italian and American Focus-Groups, to investigate possible cultural differences. Similarities and differences emerged from the analysis.