Freedoms of children living with cystic fibrosis
Bonwo Tane, Edith (2018). 'Freedoms of children living with cystic fibrosis' Paper presented at the annual conference of the HDCA, Buenos Aires, Argentina 2018.
The objective of this research is to help better understand what is important for children suffering from Cystic Fibrosis (a genetic disorder that affects mostly the lungs, but also the pancreas, liver, kidneys, and intestine) and their families. We intend to explore the kind of lives, children having cystic fibrosis and their families do value in their daily life. This objective requires putting at the core of this study, as proposed by Amartya Sen with the capability approach, the goals, values and the choices open to these children as well as their resources and entitlements, while being mindful of the fact that situations differ from one child to another and throughout the ages and that the experiences of the illness are diverse. This entails not only examining what these children do and what is done for them on a daily basis but also how and why their families support them in the way they do. Using Sen’s capability approach will contribute to renew the analysis of the wellbeing of children stricken with Cystic Fibrosis and their families, as it combines both the possibilities and the resources they have to achieve what they have reasons to value.
To meet our objective, we are conducting an anonymous survey among families of children with cystic fibrosis. We have constructed questionnaires based on the empirical literature review on Sen’s capability approach, on children’s quality of life and with the active collaboration of the French cystic fibrosis association (Vaincre la Mucoviscidose) as well as some voluntary ill children families and ill young adults. The themes addressed by the questionnaires include families’ socio-economic and demographic characteristics, the resources, the achievements (framed as comprehensive outcomes) on different facets of the daily life (health; education; practical reason; productive and valued activities; individual, family and social life; identity, expression and self-respect; participation, influence and voice; physical and legal security), the values (of Schwartz) and aspirations of these children and their families.
Both children and parents are surveyed, the children in order to collect their evaluation of their daily life and the parents to collect their evaluation of their child’s or children’s life. Indeed, inspired by Sen’s writings, we assume that having a double data source (children & parents’ perspective) should render these data more relevant by confronting these two perspectives. In addition, carrying out this survey is of particular interest considering the few number of data and/or database specifically designed for capability measurement purposes in the field of the capability approach in general and particularly in France.
Regarding the conduct of the survey, the questionnaires are available to (children involved, about 1500*, are those aged 3 to 17) families in all the French cystic fibrosis comprehensive care centres (CRCM**). Each paper base copy is provided with a post pre-paid envelope for the filled questionnaires return and the link and code for online completion option. Families who wish to participate can choose to either complete the paper based questionnaire or fill it electronically. The parent and child questionnaires are independent and the children one is adapted to their age. That is children above 7 (aged 8 to 15 and from 16 to 17) are allowed to fill the questionnaire and two independent questionnaires are available or the two age brackets.
A complete descriptive statistical analysis of the data will be carried out on the collected data. The capabilities will next be estimated using a latent variables model, which is at present the relevant method for doing so and last but not the least, a deep analysis of children aspirations will be done.
The expected outcomes of these analyses should help provide not only a better understanding of the effective opportunities available to these children and their families to live the kind of life that matters most for them but also considering how do the existing public apparatus (health, education, housing, working conditions, financial aids…), enable or not these freedoms.
Our results will also give more information on how and what could be improved in different domains of the daily lives of affected children and their families at the collective, political and/or organizational levels in today’s support systems in France
This research will, we hope, relaunch the debate on the relevance and the efficiency of the existing public policies as far as children suffering from cystic fibrosis are concerned and more generally on the question of social justice. That of the assessment of the disadvantage of people (children, adolescents, young adults) living with a disease that might deeply affect their development possibilities and freedoms, thus leading to a unique situation of disability.
*: French directory of cystic fibrosis
**: Centre de Ressources et de Compétence de la Mucoviscidose (CRCM)