Implication des parents dans un centre de diagnostic d’autisme : étude qualitative de leur vécu

Abstract

Objective

The aim of this study was to explore the parent's lived experiences of the diagnostic assessment of autism spectrum disorder within the framework of UNIDEP, an expert center with the specificity of including parents during all of the assessment sessions by means of their presence with professionals behind a one-way mirror.

Methods

We conducted a monocentric and retrospective qualitative study following the five-stage Inductive Process to analyze the Structure of lived Experience method. Data collection was through semi-structured interviews with parents who had undergone the diagnostic evaluation experience at UNIDEP and who had received an autism spectrum disorder diagnosis for their child. Data analysis was based on an individual descriptive phase and a group structuring phase with the help of NVIVO software. The recruitment of parents according to the principle of purposive sampling continued until data saturation.

Results

Ten parents were included which allowed this sample to reach data saturation. The inductive thematic analysis revealed an experience of parents structured around three axes: 1. Getting involved and being involved by professionals: active involvement of parents, quality of reception and assistance provided by professionals; 2. A shift in the parent's position and a different way of observing: being able to observe the child differently, what the assessment framework allows them to observe; and finally, 3. Being able to acquire knowledge, understanding and the ability to evolve.

Discussion

Our results suggest that the practical modalities of the diagnostic process that enhanced the feeling of parental involvement were the One-way mirror system and the permanent assistance by professionals. These modalities were integrated into a structured process that allowed parents to progressively evolve on a journey of understanding, and induced reflection about parenting and co-parenting.

Conclusion

This study allowed us to question the concrete modalities of human and material organization of our diagnostic practice in light of the richness of experiences that this framework can foster.