Facilitating the collective expression of parents of disabled children at a scientific conference

Abstract

Abstract The European Academy of Childhood Disability is an academic association with over 500 members (health, social work and educational professionals working with children with disability) from some 35 different countries. The Academy wishes to put families at the heart of its agenda. Partnership with families has the potential to improve care and education outcomes and renew practice. It may also facilitate understanding between professionals and families. To this end for the annual conference in Paris a series of structured interactive group activities have been designed to facilitate the sharing of experience and expression of families and to gather their concerns. These activities designed by disability specialists in partnership with family representatives call on small group work “world café” style focus group methodology. They are structured, varied, interactive and take place in a specially organized conference session over 3 hours. Sensitive feedback is provided by experienced pediatricians in the childhood disability field. Parents provide narratives of significant experiences for their children prior to the conference. These are shared in groups of 3. Questions explored include “What matters for the happiness of your children? “Please give examples of things which have happened in your child’s life which seem to be key experiences” Relating to the concept of F-words, (Rosenbaum, Gorter, 2011) parents have also been asked to consider different dimensions of their children’s well-being such as friendship, functioning, fitness, family, fun, and future. Group discussions are noted, recorded, retranscribed and analysed allowing, the gain of insights and providing possible building blocks for professional training. Such qualitative data allows new topics and research on a joint family-professional agenda to emerge. These may be tackled at future conferences thus building bridges between specialists and families.