Conference NARRATIVE MEDICINE AND RARE DISEASES, June 26th 2009

““THE STORIES OF OUR CHILDREN”THE STORIES OF OUR CHILDREN”Stories combiningStories combining

PAOLA MARTINELLI, STEFANIA AZZALI, FRANCESCA FIORI

International Association Ring14www.ring14.org

t

73 M18: +/+

PROJECT DESCRIPTION

The Association Ring14 takes care of all

aberrations linked to chromosome

14.

The information about this syndrome

retrievable from literature, concern

only the medical aspects.

The Association Ring 14 has launched a project

entitled "The stories of our

children" consisting in the

creation of a specific section of the

website hosting spontaneous

narratives of families and a

collection of their photographs.

This area is accessible after a proper

authorization request, in

accordance to privacy rules in

force.

For further info: martinelli.paola@ring14.

International Association Ring14 www.ring14.org

METHODSFamilies were involved in the project and stimulated to participate in a spontaneous way. Even without entering any "default" format, all "stories" include:

RESULTS ANALYSIS

Reading the stories we infer different types of information referred to the following categories: a. Emotions and thoughts of parents at different times of their experience: Two feelings rise with particular evidence. a.a. The stories reveal a strong emphasis on the state of mind connected to the communication of the diagnosis. a.b. The other feeling that emerges could be called aspiration to share experiences and knowledge.

b. Information on the characteristics of neurological and intern associated disorders and effectiveness of different therapies: Many stories provide information about the presence of neurological and intern, their characteristics, effectiveness of treatment and prognosis.

c. Information on development opportunities offered to children: Narratives provide information about the opportunities that are offered for development in the fields of communication, sporting activities, participation to social events.

The narratives of these aspects of everyday life are important to convey in an immediate and easy way that: nobody "coincides" with his syndrome, development can only occur in presence of opportunities, such opportunities must be created / facilitated / made available.

d. Information on the development in various stages of life, the intellectual performance, the language, the adaptation and the participation: Most of the reports contain detailed descriptions of the development.

e. Information on Quality of Life: Narratives contain very explicitly an assessment of the Quality of Life of the child as well as the family told from a “person oriented“ perspective.

GOALS

Using NARRATIVES and IMAGES as a means to OUTSOURCE the personal experience related to the rare disease, and particularly to switch between the individual dimension of being patient connected to loneliness and feelings of depersonalization to a new personal and collective dimension that promotes experiences sharing, listening to each other and allows the rise of a precise identity.Facilitate the exchange of information of all types (clinics, growth opportunities, contacts, etc.) between the families.

To date, the end result of this project is the achievement of a deeper collective knowledge of both the disease (symptoms, clinical features, medical references, therapies, etc.) and the related emotions (reactions of parents, the role of siblings, family life, etc)..

* the clinical and medical description since the prenatal history of the child.* a description of the family and its daily life. * a description of the emotions of the family (parents, siblings, grandparents). * a photo slideshow of the children.