Évaluer les obstacles et les facilitateurs à la participation sociale en contextes scolaires et professionnels de jeunes atteints de mucoviscidose

Alter - European Journal of Disability Research / Revue Européenne de Recherche Sur le Handicap 17-2 (17-2):5-25 (2023)
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Abstract

This article focuses on the methodological issues involved in combining data collected by questionnaire and interview to study the barriers to educational and professional participation of young people (aged 15-26) living with cystic fibrosis. In addition to an exploratory survey of thirteen professionals, it is based on the cross-referencing of data produced from a short and adapted version of the Measure of the Quality of the Environment-MQE (n=100) and interviews of the “story of life and practices” type with high school students, students, young people looking for work or in employment (n=29). The results show the discrepancy between the responses to the MQE and the narratives produced in the interviews. On the one hand, the responses to the MQE shed light on the impact of the physical environments and the spatial and temporal organisation of the school and work environments on the experience of disability. On the other hand, they seem to underestimate the weight of human environments in producing or reducing barriers to participation. The testimonies gathered in interviews allow us to reassess the importance of these environments. The use of mixed research methods therefore seems essential to understand the respective roles of the material and human components of environments in the production of educational and occupational disability.

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