Unilateral antebrachial agenesis and prosthesis: As seen by parents and by healthcarers | Agénésie unilatérale d'avant-bras et prothétisation: Mise en regard des représentations de parents et de professionnels

Abstract

Purpose of the study: Antebrachial agenesis is a congenital deformity which is not invalidating for the children who have a level of independence comparable to that of other children of the same age. Although the appropriateness of a prosthesis is rarely questioned by healthcarers, it is clear that it is the healthcarers' own representation of this condition (their knowledge of the deformity and of the prosthesis proposed) that leads to the indication. The purpose of this study was to better understand the respective representations of unilateral antebrachial agenesis to help determine appropriate health care proposals. Material and methods: An intensive survey using semi-directive interviews was conducted in 16 families. Group interviews with three healthcare teams were then conducted. Results: Three leading topics appeared: worry about the social integration of the child, a paradoxical representation of the child perceived as independent but handicapped, and a largely negative image of the prosthesis. There was a rather important difference in the representations formulated by the parents and by the healthcarers. Discussion: The discussion focused on awareness of the narcissistic content of the expectations and the plastic and functional implications of prosthesis fitting, perceived differently by parents and healthcarers. Conclusion: The nature of the expected result involves a change in the representation of the child more than a change in the child's body, a concept which in itself is not a true objective of healthcare. Taken the understandably difficult position of healthcarers, it might be useful to propose a different scheme for the first consultation.