PhD Student in sociology, EHESS
Dissertation title: Freedoms of Children Suffering from Cystic Fibrosis. A Capability Approach
Under the supervision of Catherine Le Galès
The aim of this project is to help better understand what is important for children suffering from Cystic Fibrosis and their families — their objectives and effective freedoms to realise them — in order to bring out, in comparative perspective, the economic and social disadvantages that are specific to their daily life. Following the economist A. Sen, understanding the origins of their disadvantages, requires a reflexion that refocuses on the goals, values and the choices open to these children as well as their resources and entitlements, while at the same time taking into account the difference in each child's circumstances in terms of their respective age and the way they experience their illness. This entails studying what these children do and what is done for them on a daily basis on the one hand, and the ways their parents accompany them in their daily lives and why, on the other.
The questionnaires will be constructed in collaboration with members of the association. The survey will then anonymously be given out to the parents and to the children respectively, either through the post or over the Internet. The relevant themes, based on a review of literature on Sen’s capability approach and on children’s subjective well-being, will be selected in collaboration with the voluntary group. The parent and child questionnaires will be different and adapted to the child’s age. A complete descriptive statistical analysis of the data will be carried out. Then capabilities will be estimated using a latent variables model, which is at present the most relevant method for doing so.
The knowledge produced – including the comparison to other children – should help foster the debate about improving today’s collective support systems – be they political or organisational – to the different parts of the daily lives of affected families and children (health, education, location, working conditions, financial aids…). Achieving this goal relies in part on the choice of an approach that seeks, with the active help of the members of the association, to directly assess the lives people are able to lead by focusing precisely on identifying and understanding the ways of “being and doing” that children or parents preferentially choose in order to maintain what matters most for them notwithstanding the constraints and hazards imposed by the illness.
Using Sen’s approach will help renew methods to analyse the life situations of children stricken with Cystic Fibrosis and their families, by considering not only their well-being but also their agency, and by specifically focusing on the various means and reasons of achieving them. It is hoped that the results will contribute to a debate on the freedoms given by public policies to these children and their families, and the potential modularity and adaptability — in other words their relevance and efficiency.
This research will also provide flesh for a more theoretical question: the evaluation of the disadvantage of persons (children, adolescents, young adults) living with a disease that might deeply affect possibilities of their development and freedoms, thus contributing to a unique situation of disadvantage.